The following article appeared in the Winter 2019 issue ME Essential – the exclusive magazine for members of the ME Association – it began a series that we'll share over coming weeks here on the website as part of our September focus on education.
Emily Bailey recently started university and M.E. impacts every aspect of her study: She has had to have lecture rooms moved as they were inaccessible, has campaigned for a Quiet Hour at the on-campus shop and is in frequent dialogue with Student Support over how her study can be made to work with her M.E.
In this, our new series for young people with M.E., Emily will take you through her survival techniques and offer help and advice on how to survive at university…
I have now completed my first term of undergraduate study and that is something I cannot quite believe I get to say. But, I did it!
The decision to attend university wasn’t an easy one – it was filled with weeks of panicking and questioning in what world I thought it was possible that I could manage it.
The idea of going to university with M.E. and actually coping seemed pretty inconceivable. I just couldn’t picture it working and I very nearly didn’t try, which is why I am writing this.
I didn’t know what making friends was going to be like; how I was going to keep tutors onside when I had to keep missing classes; how to cope with group presentations; who to talk to about inaccessible buildings and broken lifts; how to balance my workload; how to feed myself… the list goes on.
I shall be endeavouring to answer some of these questions over the next three years (perhaps longer), as I complete my degree, and give those of you considering university an idea of what undergraduate study with M.E. is really like.
The first term, for any student, is a lot. There’s so much to get used to and many successes and failures along the way (yes, I did have to Facetime home to find out how to change my printer ink and my family are never going to let me live that down). So, to start with I have compiled a list of the good and the bad from my first term.
Things that are going really well:
- Lecture recordings – these are one of the main things which make study manageable for me. As long as everything goes to plan, all of my lectures are recorded. This means that I can watch them sat at my desk or laid in bed and avoid the heat and noise of a lecture hall filled with 200 people. It also nearly halves the number of contact hours that I have per week.
- My flat – I am growing increasingly fond of my flat (ironic, when it was one I didn’t initially want to be in). It’s the nearest on campus to my classes, yet still stays relatively quiet. It’s a disabled flat, so all of the rooms and corridors are relatively big (a rarity in university accommodation). My flatmates and I all get on pretty well, and one of the huge benefits of us all being disabled in some way is that we generally get the “actually I can’t do that” situations or the “can we get rid of those air fresheners, they’re wreaking havoc with my chemical sensitivities” moments.
- My course – I mostly love my course. It’s interesting and challenging and really fun (for a nerd like me who enjoys study). I think this is the most important thing for someone with M.E. who is attending university: the course has to feel worth it.
- My mobility scooter (Babs) – I like my mobility scooter, she is very helpful. Because of her, I can get from one end of campus to another. She also doesn’t make me feel motion sick like electric wheelchairs do. I must admit that learning to drive her was an experience, which is to say that the first few weeks involved a few crashes!
- The microwave – I grew up in a house without a microwave, and now I don’t ever want to live without one again. After I got over the initial fear of blowing the microwave up, I have not stopped using it. Every two weeks I have carers cook some meals for me, so all I need to do for my food each day is pop them in the microwave for a couple of minutes – something I’ve even managed to do on my absolute worst days.
Things I’m not so fond of:
- My flat’s kitchen – where the flat falls short is in kitchen design. It’s like a sunroom, with two walls consisting of windows, making it very bright (ugh, light sensitivity) and very hot for some parts of the day (ugh, temperature regulation). We also have a problem with slugs getting in!
- Group presentations – firstly, I will say that I was very lucky with the people I did my group presentation with. They were great fun and we clicked really well. However, having to be up to meeting them to discuss the presentation, the guilt of having to say you can’t work on the project for a bit because seminars wipe you out, as well as the general stress of being well enough to attend the seminar to give the presentation – all of this I found quite difficult.
- Broken lifts – my legs do not like stairs very much and when the lift is out of order, I have to choose between putting my body through two flights of stairs or missing multiple seminars.
- Old buildings and my mobility scooter – unless the entire campus was constructed in the past 20 years, the likelihood is that there are going to be some pretty inaccessible buildings. I’m talking narrow corridors with no turning circle, tiny lifts, doors that aren’t automated, and steps everywhere!
- Needless to say, getting around can be quite difficult (particularly in the first few weeks). For some of these cases the solution is to have someone meet me on the way to a class in order to hold the doors open (which was slightly awkward to arrange the first week when I only knew one person from my course on Facebook and all we’d said to each other was “hello”).
- In other instances, my scooter is just too big to get around the building, so I have to park it outside and walk part of the way. I may have to resign myself to the solution of an electric wheelchair at some point.
Reducing the workload
So far I have found that I am able to cope with far more than I expected (I’m pretty sure most of my family thought I’d have dropped out within the first month – me included!).
However, I’ve also been reminded that I cannot do as much as a “healthy” person can.
For this reason, I am looking into reducing the number of modules I take per term from three to two.
If the university agrees, I can then make up the remaining credits by adding in another term at the end of my course, or through summer schools.
Podcasts
I have also developed an immense fondness for podcasts. Watching lecture recordings, reading through pdf. documents, and making notes electronically are all a recipe for headaches.
There have, therefore, been many periods of self-imposed screen bans and podcasts have been a great way to keep me entertained. I like listening to non-fiction ones throughout the day (occasionally I’ll find ones that relate to my course and so count as studying as well) and fiction ones in the evening.
Some current favourites are Wolverine: The Long Night (this one felt pretty reminiscent of The X-Files for me, so if that’s something you like then I’d give it a go) and The Orbiting Human Circus which is delightfully whimsical.
Surviving a group presentation
Group presentations are hard. They have their benefits: the workload is shared; you have other people to bounce ideas off and they are a great way to get to know people in your first few weeks at university.
However, they also put a lot of physical pressure on you:
- You need the energy to meet with your group to discuss the project;
- Complications can arise if they don’t ‘get’ your illness;
- You may be put in a group with someone who likes to leave everything to the last minute and write the entire presentation the night before, which doesn’t work very well for pacing yourself so as to be well enough to actually give the presentation.
Communication is incredibly important (a common occurrence for managing M.E. at university). If it looks like any of these things are going to be an issue then try to let people know as soon as possible. After all, if they’re unaware of your condition then they are unaware of how to help work with it.
Let your group know early on that you have certain needs approaching the presentation.
Talk to your tutor: drop them an email or visit their office to say that you’re having difficulty managing your disability with your group. They’ll probably have some good advice.
Be proactive. Get started on studying the material for the project as early on as you can, so that you have time to pace your planning and have a bit of a cushion if a flare-up of symptoms leaves you unable to work for a little while.
It can be helpful to do a little more than your fair share of work at the start, if possible, so that it evens out if you have to rest for a few days before the presentation. This can then give the opportunity for anyone in your group who may prefer the last-minute approach to make up their share of the work.
Timing is really important for your presentation. If you have control over when to give your presentation then try to allow at least a month, so that you have plenty of time to work on it.
If your tutor assigns your presentation weeks and they give you a week that doesn’t work for you then try to have a word with them to explain the situation – just do this as soon as possible!
When meeting your group think carefully about your preferred location. The library or cafes may have too much sensory stimuli and not be ideal for you.
Because my room had space for three people, I suggested holding our meetings there. This meant I didn’t need to travel across campus – I was even able to just sit in bed! Be clear when you are out of energy and need them to leave.
Most importantly: pace! Leave the days prior to the presentation as free as possible so that you can rest. This may mean deciding not to go to a few seminars, which is okay: an assessment is more important.
That being said, your health is always priority number one. If you are not well enough on the day, then don’t push yourself.
Keep your group updated, and make sure you send an email to your tutor to explain the situation.
Because of the likelihood of absence, it is possibly a good idea to try and be in a trio or larger group, rather than a pair.
This means that you aren’t leaving just one person to do the entire presentation if you are unwell.
These are some of the main things that I have learned (sometimes through error). Other things to bear in mind are choosing a topic you feel confident in and making the most out of the internet.
Social media and shared internet folders, such as google docs, can be really useful for a group all working together without having to constantly meet up.
Stay tuned for Part 2 of this series from Emily which will appear next week!
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