Last reply 11 months ago
Is there any hope for my future?

Hi guys, somewhat of an infrequent poster here.

I believe I have posted here before about my tough time living in limbo without a diagnosis and then actually getting my diagnosis and struggling with university – so I won’t go too much into that. The long story short with all of that is I had a rather nasty relapse that began in about March 2017 (shockingly still ongoing) and basically lost most of my control over my brain, legs, arms etc. I couldn’t sit my second year exams at uni because of the state I was in and had to fight tooth and nail to be able to retake the year (faced some naughty discrimination from the university while that went on, actually). Now I’m back at university, things are looking even more bleak than they did before.

I actually managed fairly decently during my first semester, but as the semester wore on everything got much, much harder to cope with. The whole time my MS was there, wrecking havoc with my body. Towards the end of last semester I got a Christmas Temp job working at a high street retail (department?) store on weekends and for the first time in years it was something that I actually genuinely enjoyed. The work was tiring, yes, but it also was completely stress-free and didn’t require me to use my already failing brain to sit down and work at complicated problems (university). As of last week my contract expired, but they actually wanted to keep me on permanently. This was fantastic news, but given that I was struggling with university already I said that I couldn’t continue, but thanked them very much for giving me the opportunity and told them I would be very interested in coming back the same time next year.

Where I am at the moment with university – doing a maths degree and not being able to make sense of numbers on paper – has made turning down that job offer the biggest regret of my life (second to actually going to uni in the first place). It has reached the point where it has become so impossible for me at university that dropping out is becoming more and more inevitable, but is something that puts dread in my heart. I’ve already sunk two years of my life into university, including my granddad actually paying £18k out of his pocket to fund that, and now I’m in my third year (retaking second year) and have taken out a student tuition loan for this year as I imagined it was the safer route with my MS.

If I end up dropping out then essentially I will have wasted 3 precious years of my life and will have got nothing for it. Not only that, after dropping out I will just be a guy with absolutely no qualifications and struggling to get a job. This would be hard enough without my MS, which causes me to have lots of issues with mobility every now and again and gives me horrible pains that make doing things a nightmare (for example right now my spine is on fire). So without this degree, that is basically impossible to complete, I am an unqualified disabled person for whom work is even more difficult to find because of my MS.

So my question, after all this writing, is that has anyone been through a similar experience? At the moment I have slipped back into a nasty MS-fuelled bout of depression and haven’t eaten anything for 5 days other than a banana and a few pieces of toast. At the moment I am completely paralysed by my fear of the future and the uncertainty of my life ahead. My mother is a single parent who very much struggles to pay the bills every month and is only getting by with the small amount of grant I get from the university. If I were to leave my course I would just be a burden on my mother who is already struggling and would just cause things to be worse. There isn’t really a support network that my mother and I can rely on as no one in my family is particularly well off – my granddad was actually putting his life savings into my education which makes me feel even worse, so he’s not loaded or anything.

As an emotional wreck I would really appreciate any advice from anyone who knows if things get easier. Is there any chance of an unqualified disabled person being able to find his way in the real world or is life destined to be all doom and gloom. And on top of that, is this what life living with MS is like – just falling at one obstacle after another? I mean, I have only been recently diagnosed (July last year) but have been dealing with this for about 4 years, but everything seems to just be getting worse.

Thank you guys from the bottom of my heart for being here, and also I really apologise for the essay I’ve ended up writing. I started typing and just couldn’t stop, as this is stuff I need to get off my chest.

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marcyg921
11 months ago

First of all I’m sorry to hear how much of a hard time you are going through, its never easy to balance this condition with MS but I do urge you to not give up. Yes it seems hard now but if Maths is something you love doing then you shouldn’t let MS stop you from achieving your goals because I would hate for you to wake up one morning in 10 years and think ‘What if’. Also you’re still newly diagnosed, it takes time to come to terms with a lifelong condition like MS. I assume the University knows about your condition and if so they really should be taking measures to make sure you can complete your studies while making sure you can look after yourself.
Overall just because you have MS doesn’t mean you have to stop living your life. We all go through this stage thinking about what the future but that’s because MS is so unpredictable and lifelong that you’re scared for the future but trust me when I say this, IT DOES GET EASIER. Yes we all have good days and bad days but its important to not let the bad days get to us and to just try and continue living. Remember you only get one shot at life and life gives you obstacles, you need to try and find ways to overcome those obstacles so you can go on and live a fully and happy life.


vixen
11 months ago

Hello @eigenhater. Is am so, so sorry for what you are going through, it would seem you’re in a huge crisis phase at the moment, so first things first. OK, so you didn’t choose to have MS, it chose to invade you and I am pretty sure your grandad would say you are worth any amount of investment. He never envisaged you would have MS, either.

All your fears for the future are real and valid. But, you need to try and find a way to park them for now. Especially with your reduced brain capacity, you need to focus on one area at a time, which should be right now. I have been involved in education for almost twenty years, and I can tell you that Your university have a duty to support you through this time. is there any way you could get accreditation for 5ise two years? For example, there are options like Open University who could transfer your credits for you to finish a degree with them, I’m sure.

You don’t need to give up on your dreams just because of this huge health blip you are going through. It will pass and get easier. You are dealing with so much right now; you have health issues and concerns, but you are equally so young to be bearing the burden of guilt for your grandad’s money and your mum’s circumstances. You sound like such a lovely young person who has already gone through a lifetime of stress and angst.

Not eating is not going to be helping your MS at all! Or your thinking brain! Do you have a college counsellor you can access? Also, your temporary disability might entitle you to some help through asssitive technology of something via the SEN department. It’s tough, but in this life, you have to do the asking as it’s unlikely people are going to flood you with offers of help at University. You won’t see this now, but at some point in the future, you are going to look back on these dark days and realised that your strength of character has gotten you through this period of time. Have faith in yourself. Ask for help, and remember that it’s not in the Ini’s interest to see you fail at all. Please send me a friend request if you’d like any extra conversations or anything. I feel so strongly about education and, having MS myself (admittedly as an older person) I really do get what you’re going through as I was recently diagnosed myself x


eigenhater
11 months ago

Thank you both very much for your replies, it is nice to hear some encouraging words.

@marcyg921 I did at one point genuinely love maths, and I still feel I do to an albeit lesser extent, but I just feel that university and MS is sucking the joy away from my passion for maths. I was once extremely active and did lots of physical activity – I played basketball at a high level and also ran track at a high level – but that was taken away from me with knee surgery and now the last thing in the world that I felt I could rely on (my brain) is failing me and I feel like I’m completely lost.

I am fully determined to lead a happy life, and I hope that I can make that a reality, but it is really difficult that this stage of my life when I should be setting up for my future that I am only facing obstacles that I can’t overcome. I would like for nothing more than to be able to finish this degree and at least evaluate my options, but I also don’t want to drag this out for too long (took a gap year first and now third year of university but have only managed to complete one year) and I would like to be realistic.

@vixen thank you for understanding. I feel that, right now, it is so unbelievably difficult to park my fears as it literally concerns the rest of my life and that genuinely scares me. I agree that my university have a duty to help me but I asked last year and didn’t get much, causing me to not be able to complete the year, and it looks like this year may well go the same way. When I think of it, though, what exactly can the university provide me with? If my brain isn’t working it’s not like they can make the exam any easier for me, or allow me to pass with a lower mark or anything outrageous like that so I really don’t know what more help to ask for.

I spoke to the mental health adviser a fair bit last year about my health in general and possible options for the future of my education, and while she was super helpful with helping me manage my feelings the only real “solution” for my studies was to suspend my education and come back when I felt better. This was echoed by almost everyone I spoke to for help, and wasn’t really helpful as with MS I wouldn’t know if my condition would get better within two years (uni only allows interruption for 2 yrs). I have received support from Student Finance DSA by way of an adjustable desk to study at as well as a chair and a laptop, but again it comes down to the sheer fact that my brain is currently not working and nothing short of a miracle will drag me out of this, by which time I fear it could be too late to recover the year… again. I have said to myself and my mother that if this doesn’t work out this year that I am done and she seemed to accept that. The struggle is what comes next and – again- that scares the living daylights out of me.

Also I have considered asking if I can get some sort of accreditation for my first year since I actually passed that with a 1st (which is all the more reason why my struggles are so heartbreaking – I was a smart guy once!) but I hope to find this out tomorrow when I have a meeting with one of my support officers.

Once again @vixen I really appreciate your insight and I think I’ll take your offer of a friend request up, should I feel the need to talk to you again. Many thanks


edmontonalberta
11 months ago

@eigenhater

This is probably not what you want to hear; if I were in your situation I would recognize that Plan A is gone – you need to come up with a Plan B in your life. One that can be modified to Plan C if needed.

I used to play math games with friends. One would give us a one digit & a two digit number to multiply. I could always give the correct answer before my friend with a calculator could; now my brain is complete mush as far as numbers are concerned.

Not saying you are unable to enjoy life; not saying you are unable to get into a relationship or keep a job. All these things are possible. Yet, if I were in your shoes, I would ask myself the purpose of a University degree; and is it worth the money?

It appears you have your family on your side. This is big; imperative whether you go through life 100% healthy; or not… Your next step should be to honestly analyze your strengths & weaknesses. Then come up with a realistic Plan B.

Good luck; I wish you the best…


potter
11 months ago

Have you thought about giving your education a break. It seems to be stressing you out and stress makes your MS worse. Perhaps the store you were happy at has a opening, you can work there and have some stress free time to get a handle on things. If your working you could start paying a little money to your grandfather, it will make you and him feel better. Are you on a DMT, if not get on one, do your research and find out which one works for you. If I was young I would go with a agressive treatment. I was lucky I finished my degree before I was diagnosed but my math and spelling abilities keep sliding downhill. You need to start picturing a new you, I hope this helps it takes awhile to get a grip on your diagnosis. Potter


edmontonalberta
11 months ago

@eigenhater

Regarding granddads money & your 3 years invested in University – research the term “sunk money”. I had never heard of that wording until a few months ago, yet I have managed to ignore sunk money my whole life. And my life has turned out well & I have had fun.

The ‘sunk money” philosophy means that the financial investment is gone; the time investment is gone. The only thing that matters is the future. Plan accordingly… 😉


stephz
11 months ago

Hi @eigenhater Check out Chronically Academic https://chronicallyacademic.org/ and the FB page and feel free to join – we are a peer support network of chronically ill & disabled academics from undergrad to Prof – it’s a treasure trove of support, positivity and community. I found them just after my diagnosis and it has been great support for me in addition to places like Shift.


eigenhater
11 months ago

@edmontonalberta Surprisingly I actually really appreciate the honesty. I agree that it is entirely possible that the “Plan A” ship has sailed and perhaps it’s time to look at “Plan B” and potentially onward. I am looking at talking to all the right people that I think can provide me with support – no matter how much or how little – and I am hoping by piecing all of this support together I can either get the help I need to power through this degree with a brain that functions at approximately the same efficiency as a potato or put things in place to move forward with my life and take a different path. The only thing I know that is constant is the MS, and I guess that’s just some BS we all have to live with.

It’s also funny you mention a supportive family as only my mother and a really close aunt of mine know. I honestly couldn’t ask for a more supportive mother and she means the world to me (although she could do with learning more about MS lol) and my aunt is a good person to just talk with about random crap but for the most part I think telling the rest of my family would be a little problematic and possibly be too much for my grandparents, bless their socks. Not that I don’t think the rest of my family are supportive in general – they’re pretty good. I also appreciate the advice on planning for the future, sounds like something I need to sit and think about!

@potter I have actually given a little bit of thought to taking a break from education over the past few days. The way I see it is if I am not able to work through this with my potato brain at the moment then perhaps I will be able to do so at a later date.. or perhaps not. I feel that if I were to take a break from my studies – interrupting is what I think they call it – I would most certainly look at approaching my previous employer at the store I enjoyed working at and see how things go. If at any point I felt confident to return I would hopefully make a spectacular comeback, or if I felt that it was becoming something increasingly unlikely to happen the I would consider throwing in the towel (not a phrase I like using but meh stuff happens).

I am actually not on a DMT despite being diagnosed about 7 months ago (?) and experiencing increasingly bad symptoms that haven’t shown any sign of letting up in over a year. I don’t know where I stand with how aggressive my MS is (although given the definition of aggressive I’d have to say my MS is pretty darn aggro) and why on earth I’ve not seemed to come out of this relapse that is looking like it wants to break world records. My neurologist for 3 years (who has now left) wasn’t initially keen on dropping a diagnosis in the first place, and even after she did I’m not sure she was very happy with the idea of starting DMTs. Having spoken to my MS nurse, she says pending the results of an MRI that I have in a week my new neurologist will discuss my DMT options with me. I plan to go in very prepared! I feel like most people tend to start DMTs very soon after diagnosis, though, so I’m a bit sad that it’s taken a while.

@stephz wow what a phenomenal resource!! It feels really nice to know that there are also other people who have to struggle with these issues too. Sometimes I feel like having MS can make one feel very isolated and I’ve noticed that more so than over over the past few weeks. I find that now even reading blogs about people with MS (there’s quite a community of MS bloggers) sometimes makes a person feel better in their own mind and at times gives me reassurance that I’m not going mad and it’s not all in my head. It is so nice to find a place that has all of these things, but also is tailored around something that is a very big part of my life – academia. Thank you very, very much for pointing this out – I am ever grateful 🙂


Anonymous
11 months ago

@eigenhater – I was diagnosed on my 20th..5 years ago. I was 2 months away from uni. 3 months left in college & that was it… my symptoms began when I turned 18.. being young I ignored it & continued to do me. Fast forward a few months & I get optic neuritis. I got depressed. Gained weight. Lack of motivation. My tutors didn’t help me, if anything they added more stress to my problems. I had no support apart from my mum.
Anyhow, I eventually left college as I couldn’t do it tbh.. the stress, the headaches etc was to much, pain was unbearable.. I felt so guilty as I’ve always been a high achiever. It killed me to drop my education which I love so dearly, to leave those dreams associated with education.. it was hard, I still can’t come to terms with MS.
I did have a job in duration at college, but my diagnose happened etc,& I ended up leaving as it was to much at the point. Sainsburys great place, they did offer a substitute job in their store, behind a computer.. but because of optic neuritis I couldn’t add any stress to my health, it’s why I had no choice but to leave college.
For the past 4 years I’ve been trying nonstop to have an income or atjeast a steady education, but even tho tutors say “Yh we understand” they don’t understand. I hate it tbh.. discrimination is terrible.
Anyhow,apply for esa & PIP for yourself, that way you’ll be able to help yourself & not be a burden on your Mum. As for your grandfather giving all that money, sit him down & tell him your reality, tell him what’s beeb going on & how you’ve been feeling. Trust me, he’ll understand. As for yourself, stop the stress as it’s the main MS problem. Try to eliminate stress, redeirect your life. It’s very hard I know, I’m still trying to find my purpose too.. In’sha’allah I know when the time’s appointed God will show me what’s meant for me.
Take it easy & be healthy. This is a lifelong ordeal, why make it a terrible experience full of agony & pain, when you can uplift & see positivity in your situation for a healthy better living.
It may seem gloomy atm, but trust me. Eliminate all that stresses you & think of new things to do.
We no longer have the life we dreamt of by going uni etc.
Getting diagnosed means a new direction of life. A new different goal in life. Out with the old in with the new.
As for a job, try part time in supermarkets like till service or scanning etc. Less walking!
Stress free Job. May not seem like what you wanted, but heal yourself mentally & physically you never know in a year you could go back, although I’d say screw it. To live healthy & on your own 2 feet’s do what’s good for you, not what’s good for others, but good for you in long term bases. I dropped all that stressed me, I’m not totally stress free, but I’m not so agitated & worrisome. Still looking for jobs that’ll suit me. It’s kife, it keeps changing. Nothing stays the same!
Hope you figure this out.


edmontonalberta
11 months ago

@eigenhater

Thank you for appreciating my thoughts – I like communicating with logical people.

@sayhidoee

Ignoring the typos, your advice is perfect for another young person!

Thank you…


eigenhater
11 months ago

@edmontonalberta You are most welcome – after all, you have helped me clear up some doubts in my mind and made me feel a bit better. I believe that everyone’s input, no matter great or small, should be appreciated equally as everyone has their own valuable pieces of information to offer. I agree it is nice communicating with logical people. Sometimes I feel that maybe I should write this stuff down whether it be a diary, a blog or something of a mix between the two. Sometimes I feel that my logical way of thinking is the only thing I have left. But’s that slowly slipping away too..

@sayhidoee I am sorry to hear about the unfortunate timing of your diagnosis and your issues with college. It is somewhat nice (wrong word, I’m certain, but sometimes it’s hard to find the right word) to hear that someone else has gone through what I am currently going through because I feel that if you were able to get through it then I can too. I am thinking of maybe applying for some supermarket roles in the near future but at this point my MS keeps getting worse day by day. For example, today I can barely walk. It’s happened before, so I’m not overly fussed (but I’d be lying if I said it didn’t annoy the crap out of me) but it’s just another thing to add to the list of 101 things that are slowly beginning to drive me insane.

I totally feel your pain on the tutor side of things. Everyone claiming that “they understand” when they couldn’t tell you the first thing about MS. I had a meeting with someone at university yesterday and, while I know he meant well, he said that maybe my cognitive issues and tiredness problems were down to the time of year and the fact that it was second semester and maybe motivation wasn’t there. That’s the last thing anyone with any issue wants to hear, as I’m sure you can appreciate.

I’m not sure how I feel about PIP & ESA quite yet as, despite me being classed as disabled and ticking most of the boxes when it comes to “in need of *personal* support, I don’t think I would qualify for the Daily Living Component (if I would I would barely scrape the standard rate) and definitely wouldn’t quality for mobility since I can walk more than 200m (takes ages, though). In addition to that I hear the process is quite laborious and I really don’t have the energy for that, so perhaps at some point down the line I’ll consider that but that’s a “later on” problem.

I, too, have found comfort in faith during my experience so far with MS and I am also a firm believer that God is the best of planners and has something in store for all of us. Of course, all of this still doesn’t make the issues of right now go away, but it’s a nice reprieve from the daily doom and gloom. In general, though, I really appreciate your advice and I enjoy your happy and positive attitude. I agree that it’s wise to take it easy and be healthy, and I think I’ll try and adopt some of your positivity for the future.

Again, thank you.


rambles
11 months ago

@eigenhater I don’t have experience to offer you – just experience of the same head spinning ups and downs (I was diagnosed after an ‘episode’ like yours in the summer of 2017) but do know (from working life) that most universities are a lot more flexible for students experiencing health issues than it might initially seem.
You might not want to go back to your degree, and it might be too much, but if I were in your situation I’d ask to delay it meantime and give yourself the option of going back. Find out what your options are. Some universities will let you delay exams with good reason – and you certainly have one. Also, you should qualify for support which can take a variety of forms depending where you are studying – extra time in exams, a study support tutor, help with note taking, computer/laptop and and assistive software, counselling are all possibilities. It might be worth making an appointment with Student Support to explain everything and see which of these options are open to you, either to make use of now or after a break.
You enjoyed the temp job you had and it might be that if you phoned them up that they would take you on again before Christmas – people are always going off on maternity leave or whatever. You could do that or something like it for a set period, maybe defined by what the university say you can take off. Then maybe just forget all about university for a bit, give yourself time to get better and review everything when the time comes?

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