Going to university with CFS/ME

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kittykat7333
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I've applied for studying zoology at university starting this year and although I'm excited to go I'm worried about how being chronically ill will affect my studies and uni life
I was diagnosed with CFS/ME four years ago and it got so bad that I had to take a year out of school after my GCSEs - I still got good grades and I'm now studying at college but I'm still worried that I might seriously flare up and crash. Chronic pain and chronic fatigue are the two main symptoms that affect me and cause issues. How have other people with CFS/ME managed the condition at uni??

I'm thinking of possibly applying for a DSA for a part time wheelchair/mobility scooter, I don't use one now but walking tires me out pretty quickly and having one to get around campus might reduce the severity of my symptoms. Problem is I don't know if I'd get the allowance as I don't currently use one and the last time I asked my doctor about a part time wheelchair he said he "didn't want me to be stuck in a wheelchair forever" and that I was too young to really need one

What do you guys think? Any help or advice from other spoonies would be greatly appreciated!!
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StormyOcean
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Hey! Congrats on the university offer. There are quite a few things you can do to help yourself out at uni.

1) Talk to the accomodation people - If they know you have an issue with energy levels and sometimes mobility they will be able to work with you. This might include giving you a ground floor room so you don't need to take stairs, putting you in the accomodation closest to lectures and providing a shower seat if standing for long can be an issue

2) Talk to the student support/DSA people - I am pretty sure if there is adequate evidence to support how it will help I dont see why you cant get a wheelchair or some other form of mobility aid. There will also be other stuff you can be offered like software to record lectures if writing tires you out etc.

3) Declare your disability to the university. This will mean they can try accomodate you in any way possible. So if you do have a wheelchair they can make sure your lectures are in wheelchair accessable rooms and there are disabled toilets.

4) Make sure when you arrive to sign up to the on campus or local GP surgery. This will mean if you do have a flare up you can be seen quicky and also have a home visit if you physically can't move.

Lots of luck with uni, I hope things go well for you. Most unis are pretty great at handling disabilities and if you do find any issues you can raise it with the uni and get it sorted. Also try get your DSA sorted earlier than later as I know at least at mu uni it can be quite a long process!
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Pathway
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(Original post by kittykat7333)
I've applied for studying zoology at university starting this year and although I'm excited to go I'm worried about how being chronically ill will affect my studies and uni life
I was diagnosed with CFS/ME four years ago and it got so bad that I had to take a year out of school after my GCSEs - I still got good grades and I'm now studying at college but I'm still worried that I might seriously flare up and crash. Chronic pain and chronic fatigue are the two main symptoms that affect me and cause issues. How have other people with CFS/ME managed the condition at uni??

I'm thinking of possibly applying for a DSA for a part time wheelchair/mobility scooter, I don't use one now but walking tires me out pretty quickly and having one to get around campus might reduce the severity of my symptoms. Problem is I don't know if I'd get the allowance as I don't currently use one and the last time I asked my doctor about a part time wheelchair he said he "didn't want me to be stuck in a wheelchair forever" and that I was too young to really need one

What do you guys think? Any help or advice from other spoonies would be greatly appreciated!!
I don't think they'd provide a wheelchair or mobility scooter for you because you'd incur this charge regardless of going to university. They'd suggest you apply for Personal Independence Payments and depending on how severe your CFS/ME is in terms of limiting your mobility you may or may not qualify for the Enhanced Rate of Mobility which would mean you'd be able to get a mobility scooter from Motability.

I went to university and got a great deal of support from the university itself and from DSA because of my physical health issues and mental health issues. I also deal with chronic pain and chronic fatigue like you, although I don't have CFS/ME. At university I had an accessible room on the ground floor on camppus all three years (was also ensuite), the university helped me pay for my accommodation as well as SFE refused to despite DSA saying they needed to, longer library loans, they didn't mind if I didn't turn up to lectures providing I told my disability support worker about why I didn't turn up, almost unrestricted access to recorded lectures, early access to slides, helpful software, extensive exam arrangements etc.
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chelseadagg3r
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(Original post by kittykat7333)
I've applied for studying zoology at university starting this year and although I'm excited to go I'm worried about how being chronically ill will affect my studies and uni life
I was diagnosed with CFS/ME four years ago and it got so bad that I had to take a year out of school after my GCSEs - I still got good grades and I'm now studying at college but I'm still worried that I might seriously flare up and crash. Chronic pain and chronic fatigue are the two main symptoms that affect me and cause issues. How have other people with CFS/ME managed the condition at uni??

I'm thinking of possibly applying for a DSA for a part time wheelchair/mobility scooter, I don't use one now but walking tires me out pretty quickly and having one to get around campus might reduce the severity of my symptoms. Problem is I don't know if I'd get the allowance as I don't currently use one and the last time I asked my doctor about a part time wheelchair he said he "didn't want me to be stuck in a wheelchair forever" and that I was too young to really need one

What do you guys think? Any help or advice from other spoonies would be greatly appreciated!!
I'm at uni with CFS/ME, and I won't lie it's been difficult but I wouldn't want to be anywhere else.

I will say you're very very unlikely to get DSA for a wheelchair/scooter. This is something that would need to come from your local authority, and funding is very tight. Even when I couldn't walk more than 10 steps I couldn't get one. DSA is for study related things like note takers, dictaphones, specialist software like dictation software and colour filters etc. The closest thing they offered me was a small lightweight suitcase on wheels to carry my things to classes in instead of a backpack, but I didn't take it because the uneven weight caused me more pain.

I also had to take a year out, though I did in the middle of college. I did my first year, was forced to take a year out, then went back and then came straight to uni. I've definitely flared and there's been weeks in a row where I haven't been in at all, but I'm very good at managing my time and getting things done. I have an access statement from the uni disability team and this allows me up to 2 weeks extension if I need it as long as I ask for it in advance of a deadline which I use if I'm getting behind and haven't been able to work at home as much because I've been sleeping most of the time.

Halls can be really tricky because they're loud and very social. I would definitely speak to the disability and accommodation teams about getting suitable accommodation for you so that you can be as close to everything as possible, have a suitable room, and can be quiet enough to give you space to rest when you need it. You might find you're better off in a studio or something like that, but it also depends on your budget.

Also think about things like travelling between uni and home. I live quite far from any unis and also in the middle of nowhere, and I wanted a really accessible city so came to Nottingham, but it does mean I can't go home for the weekend when I want to because the 2 hour journey each way tires me out too much. In first year I was lucky because my mum could come and visit me, but this year she hasn't been able to apart from one of two days so I've hardly seen her, and only went home for Christmas. Definitely keep this in mind, because it's good to be close enough to your support system so that you can use them if you need to.

Chances are you will flare up and crash at some point if this happens to you already, so it's really important to be in close contact with your university disability team and course team and keep them in the loop. If possible, meet with the disability team before you get to uni so you can get things like adjustments and access statements sorted in advance. Mine allows for the extensions I mentioned earlier, understanding for more absences, to ask for classes to be reachable by lifts or level access, and to allow me to switch groups so that I can tailor my timetable a little bit so it's more suitable
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