Chronic fatigue and further tests

[Jjjaaakkk]

My DD is so poorly, under all sorts of consultants and treatments!
But with major support from me ( I do everything, even reduced working hrs) she’s set to do well in her A levels.
She wants to go to uni, has an offer, but how will she manage? She can’t walk more than 2000 steps per day

I suspect the best thing would be to get in touch with the disability support people at her first choice (and possibly reserve too) as soon as possible, to find out what they can do to help.

Huge sympathy from me as I have ME/CFS and can't imagine managing with it as a student. Good luck to her. If she's on Instagram she could have a look at this book, by a great chronic illness blogger www.instagram.com/p/CZH68PnsOjD/?utm_source=ig_web_copy_link

Thank you, I will definitely do both!

I know a young lady who had severe chronic fatigue who went to Nottingham to read Chemical Engineering. It was pre covid and they were already recording lectures etc which meant she could watch them in her own time. Now post covid I think more are planning similar so definitely talk to the unis they are interested in about the level of support they have. We found the disability teams very helpful prior to making choices even with spld.

Also apply for DSA. They may even fund taxis for her.

Thank you

Hi @Jjjaaakkk we’re in a similar position with DD who has complex health issues and so only applied to 2 local universities so she could study and be a home student

Talk to student support services at the Uni’s and also lecturers to see what they can offer and also how much contact time there actually is. DD only has 10-12 hours a week, DS will have similar too

DD will need recorded lectures, access arrangements and taxi’s due to disability and also computer and software etc.

All these things can be provided by DSA, we met a student at one visit in a wheelchair and who had carer support too

Don’t forget your DD can still claim PIP too alongside extra DSA support

Last night DD received an offer for the closest of the 2 uni’s she applied to after talking with the disability support unit to ensure they could support her.

It was an unconditional with an added offer of £1k bursary so she’s feeling fantastic today

Hope things go well for your DD, I’ve had CFS and Fibromyalgia severely for 20 years so understand how you are feeling but Uni support seems better than school with an EHCP

Thank you, I’m seriously getting onto it now!

Hi OP, I was diagnosed at 15.

My doctors advised me to take a year out before university (especially as I was studying an intensive course). I decided to go straight to university as I didn't want to be resting at home whilst my friends started their first year.

Looking back, I made the wrong decision. My first two years at university were hell in terms of the CFS. I took time out between second and third year which did wonders and I eventually graduated with flying colours....but it was a difficult road to get there.

Definitely get your DD to apply for DSA and to get support from her course leaders straight away. The more support and understanding the better.

I’d love for her to take a year out, but at the moment she doesn’t want to. She may change her mind in the summer, fingers crossed.
I’m glad it worked out for you in the end, sorry you’re having a tough time

I'm alot older than your dd but recently went to uni after surviving sepsis in 2018, which left me with conditions very similar to your daughter.
The support I've recieved from my uni amd the dsa Assessors have been nothing short of brilliant.
As a clinically vulnerable student I am allowed to learn at home. All my lectures are recorded and I have sessions with my Lecturers.
I also have note takers who send me notes of all my lectures, and a study mentor.
In terms of equipment I got a really great chair and a sit/stand desk. I also recieved a laptop with loads of assisting software.
I got extra time for my exams and my reasonable adjustments included classrooms that weren't to far away if I did choose to go in campus and classes and exams on alternate days.
I also could have taxis buy I choose to learn from home as having kids it's alot easier for me than travelling to campus.

It’s so nice to hear that there is help, as things can get so difficult. She has an OT, so hopefully we’ll be able to get her the help she meeds

It's so encouraging to see positive posts about support available here. Best of luck to your DD.

Hi, OP -

I very much hope your DD will be ready for uni this Autumn. You already have great advice regarding the support available to her.

But as someone who has sat on many Mitigating Circumstances panels, I want to draw your DD’s attention back to what @Einszwei said.

One of biggest mistakes UG students make is to partially resolve a health problem and (usually with the help of numerous MC petitions, a risky strategy) limp along to a lower degree classification than they would otherwise achieve.

In recent years the proportion of 1st class and 2.1 degrees has increased and most large employers now require a 2.1. The ‘limp along’ strategy is not in the student’s best interest. Also, if your DD is fatigued she won’t be able to fully experience uni life - I realise this is a secondary consideration, but some of the extramural aspects are career building. Also, one hopes she will find the whole experience satisfying. She will need to define that.

If your DD isn’t in good health by late summer, I think it would be in her best interest to consider a deferral. I am sorry to be saying that.

Hi and thank you, I totally agree she shouldn’t go if she’s not ready but this has been going on got three years now and I’m seriously worried she’ll never be ready. The problem is she wants to go, is bright enough, and is 18 and feels the whole world is against her!!
MC petition??

Sorry you mean mitigating circumstances!

Being sidelined by fatigue during high school must be awful for your DD, especially during the peak FOMO years.

But I and I think @Einszwei (as well as you, I am sure) are basing our comments in the fact that we want her to have a good time at uni, not just to scrape through. Is she improving at all year on year? If not I see why she may need to take the plunge and hope for the best. If she is improving but not enough, I reluctantly stand by my comments. A tough situation for you, I am sure!

I guess I just want her to have her life back!
We’ll just have to make the best decisions we can at the appropriate times, and hope…..🤞

Another factor may be the university size. If accommodation is far away or if it's a big / city campus, this may take it out of her more than a smaller or campus university and she may have to walk a fair distance between classes (eg 15 minutes walk between buildings where I studied, pedestrianised and hard to get taxis in). Many campuses are also very overcrowded and rooms can't be changed to more central ones or timetables can't be altered due to lecturer / rooms availability.

Disability support can be excellent in some institutions but others may be overwhelmed at the moment with quite long waits.

Learning remotely or using recordings works well for some students. Others learn less effectively without peer support of being on campus together - remote learning in the pandemic has really shown the value of informal chats eg figuring out to do assignments, talking about study problems, reminding each other of tasks they had forgotten about, as well as the motivational and social side of things and FOMO. Some courses also feature a lot of groupwork where distance students can feel quite marginalised.

Depending on the subject, there may also be classes (labs, language classes or seminars in social sciences) where the student does things hands-on or talks through them as an important way of learning so video input is only part of it. Just some things to think about when you're considering the course and university.

@jjjaaakkk Just come across this podcast by chance, also with some links to further info. Not listened to it but maybe helpful??

natashalipman.substack.com/p/how-to-navigate-university-with-chronic-20a?utm_source=url

Awesome, thank you