Last reply 8 months ago
Trapped In My Own Head

Hi Guys, this is my first post and I am just writing this now because I really feel like I could do with some help. I don’t know if anyone else feels like they are trapped in their own head but I do. I was formally diagnosed with MS over summer but have been living with the symptoms for about 18 months, I am currently in my final year of uni and to be honest I don’t know how I am going to continue. I feel like my memory is sooo rubbish now and no-one around me can seemed to relate to me being tired all the time (they put it down to laziness). I really feel like I’m on my own and finding it really hard to stay motivated to complete even the smallest tasks. I have had anxiety attacks twice in the last week and my friends are now confronting me about my mood changes but I just don’t know hat to tell them, who to speak to or where to turn and I am now starting to feel very alone. In the last 4 months I have changed from one of the injections to currently taking Tecfidera. If anyone else was/is having difficulties with some/ all of these issues or if you know anyone that was struggling with juggling everything. Please let me know on how best to deal with these situation. Ri x

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8 months ago

Hi @riannasj , I hope you feel just a littler better for writing that down. A problem shared is a problem halved……

Anyway, there have been a few previous posts about managing university with MS. Universities are very good at helping their students manage their studies, whilst managing a health condition.

This video may help :-

You’ll feel better all round if you can take some of the pressure off.

8 months ago

@stumbler thanks for replying. I have told my uni and you’re right they have been super helpful. I think I’ve veen a bit stubborn trying ti sort this all out myself and it all just built up, definitley feel alot better now. Thank you.

8 months ago

Hi @riannas I was going to tell you all of the above but Stumbler has beaten me to it! Seriously though, tell the uni about the ms. You will be given extra time for essays etc, recording lectures and lots more so please ask for help,,it will be given freeland if you want to keep it a secret ‘mums the word’ they won’t divulge anything to anyone if you don’t want them to. You are not alone, we’re all here to listen, offer advice, have a laugh, try and sort out problems anything you want. We don’t judge, are quite amusing are times but serious if necessary, just don’t forget, with ms, there’s no such thing as a stupid question. I’m one if the old codgers, have had the beast for 26 years, changed to Tecfiders 10mths ago. Been through all the symptoms, am 62 years old, still here, still fighting, NHS, government, council, the system, DWP. You will survive, everyone here will help if they can😍🙏🏻🤙

8 months ago

Hi yeah
Most diffecult years I’ had with MS was in the latest couple of years I was on avonext rebef and it made me feel deporessed altho im not the type of person who believes much in deporession as a problem with the mind but its results of life issues
But with rebef i did i even lost my mind my brain couldnt keep up my grades went from A to D
In finalle i coupdnt hold a pen or open a bottle of water in the latest couple of months when i was working for uni
I left it and flew off to US met a prof
He said if o didnt start tysabri i’ll be disable in the end of 2011 or bedbound probably

I didnt and stopped apl treatment after graduation i traveled to scotland alone
To learn English language and I volunteered too at citizens advice for 2 years and a bit
Returned 2015
Now im in my country stipp fully healthhave an evening job hopping i find a full time job
After rebef i’ve been refusing apl MS treTments since 2011
But last month doctors said i must go on some treatment so yeah Gilenya now I hope its safe and poisoningmy body for some high benefit X
Dont give up
I was daignosed 2005 age 17 when i was at highschool

8 months ago

Being at uni, I’m sure you’ve got alot of things going around in your head, uni is hard enough let alone adding MS to the mix. I agree though, let uni know even your close friends too, rest where you can and try to do your tasks when you feel you have more energy.
I’ve just started open uni, I’m alot older than you but they know about my MS. I’m not ashamed of it, so I’m very open about it all. I’m trying to balance it with kids and work too but I decided that it wasn’t going to get in the way of anything, I control it, it doesn’t control me so I’ll push through the tiredness but that works for me and not necessarily for anyone else. Find a routine, one that can balance uni with self care, when I was on Plegridy, that changed my mood but I do find on the days I have them, resting and writing the day off works too and tomorrow is always new day 😊.

8 months ago

Receiving the diagnosis is overwhelming, you have a label to your symptoms now but don’t let it beat you. I was diagnosed in June and immediately thought I’d have to give up work, driving etc etc. It isn’t the case – make sure you give your body plenty of rest and try do things that make you relax like meditation or even listening to music.
Tell the Uni, they are obligated to help you get through your studies. I told my manager at work and a few close friends. My work have been great and my friends also. I haven’t made it public as I don’t want people feeling sorry for me. I have a condition but I will fight the fight.
Be strong, do whatever makes your life easier. You’ve not alone.

8 months ago

I just want to thank all of you so much for the advice, I deffo took what you said into consideration and have told my uni and personal tutor about my difficulties. I’m hoping things work themselves out over time and I am able to feel a little more relaxed about things.

8 months ago

Also, ask yourself: how much better would you feel if you could do something to reduce the fatigue and improve your mood? Both are treatable with meds and your GP would, I’m sure, be sympathetic. Sometimes we can’t see the wood for the trees……. xx

8 months ago

Hello @riannasj, you could see if you could access counselling at Uni, that could help. You’ve done the right thing in letting them know. Make sure that you eat as healthily as you possibly can, challenging though that can be, living a busy life and being a student. There is a London Shift meet up once a month, maybe you could consider that if you fancy being around people who will know just how you are feeling…..

8 months ago

@vixen yeahhh that would be amazing actually, I’ve never heard of one these meets before.

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