amylee 06/11/14
Last reply 3 years ago
University and MS

I haven’t posted here before but I’m feeling really rubbish at the moment and just wanna offload………
I was diagnosed a year ago, but I had had an event a year and a half before that where I couldn’t walk for awhile and was diagnosed with clinical isolated syndrome…….something like that.

I started university in September because after being diagnosed I wanted to make sure I gave my dreams the best shot I could in the times that I am well. Both relapses were pretty bad and took awhile to recover from but both times I returned to pretty much my normal self.

I’ve found starting uni harder than I imagined. I have aches and pains in my feet. Noise irritates me and I’m easily distracted; I’m so tired after all the walking around and learning and the train commute (an hour each way) that when I get home I fall asleep and I’m not getting much study done. Today I have had my first absence because I just couldn’t face the train commute I feel so stressed and tired.

I don’t feel supported by the uni at all…….but it is early days so it might get better.

Everyday I am worrying ‘what will happen if I have a relapse?’ And I’m scared this will all end as, despite these problems, I really wanna do this course. I’m wondering if I’m stupid for thinking I can do uni with MS.

I still don’t know where to turn to with this sort of stuff. I feel like I’m whining every time I bring up MS problems. I don’t know what I’m looking for………..advice, empathy, understanding.

I’m just having one of those days where I don’t know if I can do this.

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3 years ago

Hi Amylee,
I was diagnosed over two years ago. I am currently attending a course for a cert in International Financial Services and a diploma and Professional Competency. The course is good and demands a lot of my energy. I have an hour commute each way also.
My advice would be to rest when your body feels like rest. It will give you more energy for the rest of the day. Typically, if I am exhausted, I set a timer and rest for an hour and then get on with the rest of the day. If you feel like the coursework is getting on top of you, talk to the staff in the University, I have found that back in the days when I was working on my degree, I met some brilliant people who set me back on the right track. Only focus on the things you can do, a positive attitude will conquer any mountain 😉 Keep in touch, if you need support, I am hear to listen. All the best, James

3 years ago

Hi @amylee, I’m really sorry you’re feeling rubbish right now. There is absolutely no reason why you can’t get your degree with a diagnosis of MS- I’m sure several of our members who have done just that will be along to confirm that. It might just mean that you need to adapt slightly. Get in touch with your uni’s disability service, they exist to support students with additional needs and will be able to discuss all the available options with you. From my own experience when doing my MSc, I was offered extended deadlines, longer library loans etc. I found the team really helpful and seemed to offer me more than I really needed at the time so definitely get in touch, if nothing else it’s someone to hear your concerns and offer a friendly and sympathetic ear. They might also recommend that you apply for the Disabled Student Allowance which I also did and as mine was a distance learning course that required me to travel on a monthly basis, they even covered the cost of my hotel the night before to help me manage my energy levels. They do a full assessment of things that you’re finding difficult and may offer tools (software, dictaphones etc) or financial assistance to help. From what I recall, the uni disability service made sure that there was an official support document that was signed off by my supervisor to ensure that the teaching staff were aware of my needs too and that really helped- having heard some horror stories on here about unsupportive employers I think universities are often pretty good once they know about the situation and are extremely keen to do the right thing! Don’t despair, it will be tough at times for sure and inevitably feeling rubbish always increases your stress levels which can make you feel even worse but please don’t give up- you can do it! There are lots of resources available to help you and we’re all here if you need us! Good luck and keep us posted Jane xxx

3 years ago

Really good advice here – the only thing I can add is that in my experience, doing something new with a new routine is quite likely to bring on symptoms. I’m guessing it’s because we’re asking our brain to do a lot of extra stuff and that this puts a strain on the compromised immune system. It’s the old MS stress connection! And unfortunately, even if the new routine is enjoyable, it still takes a toll. Extra help is a great idea and will make the immediate months easier but I’m betting that you will slowly adjust to the newness and everything round you – from the people to the physical surroundings – will become familiar. xx

I to am considering going back to uni maybe even collage as now I have rrms I need a new carer and no idea what as of yet. My advice would be stick with it hunn you will regret giving up, and the feeling you will get will be immense and so worth it. Find some one you can really vent to who understands you your ms nurse, friend, family or even a total stranger. I found out last week after a 5 month relapse I have rrms and I struggle to talk to my family and friends about my condition I guess I just don’t want to worry or scare them so I act like everything is fine but I am struggling and I find just chatting to a total stranger whether it be a doctor, psycolagist, or even a stranger with ms it really helps. Best of luck hope things improve x

3 years ago

Thanks all. You’re wonderful.
I had today off – I just couldn’t face it. Rested, cried, ate well and had a long bath and now feel a bit better. A lot of this is emotional for me. I’ve been diagnosed a year and most of that I just focused on getting over my relapse and then when I did I had a few months of pretending I was totally fine and it won’t happen again. And now I’ve found something I enjoy I’m just walking around scared that MS will ruin everything!
@james7 thanks for the offer of support. I might take that offer up as I know I need support if I’m going to do it.
@janep I visited the uni’s disability service and they were pants! It was focused on what money I can apply for but I’m more interested in knowing what I should do during a relapse. Will it mean I have to drop out? Things like that.
@cameron you’re right about the new routine as for the first month I did great! Forgot I had MS. It’s like it’s just caught up with me
@edward wow it’s such early days for you. How are you doing? Before going to uni I had a job as a carer……a really physical job. The thought of going back to it after all my MS symptoms pushed me into applying for uni to do something I’ve always wanted. I think after a diagnosis like this is a great time to reflect on what you want from life and do things for quality of life.

I’m going to go email the uni now I’ve calmed down about and try find some more support because I don’t wanna have to give up on this. I just need abit more time with things I think.

amy x

3 years ago

You are doing all the right things – make sure the uni knows you need support, do you have a personal tutor you can talk to about academics?
I just spent the day in bed after a whole day of parent teAcher conferences at my school, and I am supposed to be the teacher! Take a deep breath , you an do it !

3 years ago

Hi @amlylee again, just checked your profile and see you are not on any treatment. Sounds to me like you need to get back to your neuro, with details of how you are feeling and start a DMD. Lots of hugs

3 years ago

@tabbycat My personal tutor has been off sick since the start! So I’ve emailed the head of department in the meantime and I intend to go back the the disability team. It’s my first bed day since the start so it’s not too bad, I just tend to worry ‘is this another relapse?’ every time I feel ill.

I decided against treatment as I was offered copaxone and honestly felt it was alot of trouble for not much reduction……up to 33 per cent reduction. Since then tecfidera has been approved and I’m considering asking for that as it’s pill form and up to 50 per cent reduction. I’m just waiting for a time off uni so I can manage side effects. But yes, I should prob book to see the neuro too. I’ve only ever seen him twice briefly and it was at a time I was set against meds full stop. I might need something if the weird feet pains and leg pains etc continue because it effects how long I can sit still for in class.

Thanks Guys xxx

3 years ago

IMO, decisions about treatment v no treatment are very influenced by the words chosen by the neurologist. My original neuro was Prof G, he of the blog, and the way it was presented to me was as a necessary part of the package of care on offer. But there again, he is an MS specialist and many neuros are generalists and just not up to speed. I think it makes a big difference to the confidence that you can have in what they’re telling you. I’ve been on Copaxone for ten years and when I asked my current neuro (also an MS specialist) if I could go on a drug trial he refused point blank. When I asked why, he said he couldn’t risk me going off treatment. Maybe time for a re-think… remembering that it is definitely the case that the earlier you start in the disease course, the bigger the impact. Big hugs, hang on in there.xx

3 years ago

Well done Amylee for being so strong and taking on University so soon after diagnosis. It took me 4 years to embark on university life but I’m so glad I did 🙂 I find eating the right foods makes a huge difference to how I feel, including rest and relaxation. I know this will be hard because uni life is far from this! Make sure your lecturer’s give you the support you need! X

3 years ago

@amylee I was diagnosed as I finished my part time degree whst working and now back at uni doing another module. It’s tough but you can do it. You have a disability and the uni should be supporting you so keep on at them 🙂

I am also on my second week of Tecfidera. I was previously on copaxone. My side effects have been manageable and short lived.

I hope this gives you some encouragement. Wishing you all the best don’t let it beat you x

3 years ago

@amylee I have had a similar experience with uni – with the fatigue, commuting, stress and falling behind. I was lucky that my uni have been really understanding and have given me a lot of extra time to complete assignments. Is there anyone at uni apart from your personal tutor (since you said she is away) that you feel comfortable talking to? When it comes to assignments and exams you should be able to apply for extra time so have a look at the mitigating circumstances information on your university’s website 🙂 Apart from that, I would suggest taking it easy – I can sympathise with your anxiety about having to take days off (sometimes I was too stubborn to listen to my body) but don’t try and push yourself too much because it really won’t help. Also, perhaps look into getting occupational therapy? It’s quite helpful with managing fatigue 🙂 I really hope this helps! x

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