Chronic Illness At University: My Story [CC]

Chronic Illness At University: My Story [CC]

October 11, 2019 5 By Stanley Isaacs


Going to uni with chronic illnesses is hard! [Upbeat intro music] Today’s video is about going to university with chronic illnesses.
Specifically in this case, cold urticaria, and Fibromyalgia, with touching on depression
and anxiety as well, cos why not? I’m just gonna go straight into it because it’s gonna
be a long one. So when I was applying to universities, I disclosed my disabilities and health conditions
in all my applications. I had the diagnoses of cold urticaria, depression, and anxiety,
with the history of chronic pain. Which I did mention, um but because it was undiagnosed
it was hard for them to do anything with. I’d been struggling with chronic pain for
years. I don’t know how many years, but I can’t remember not being in pain. But I didn’t
have a diagnosis of why- in part because I was in Cornwall, and also because I was a
student, I had other things on my plate. Once I got accepted to the university that I went
to, they gave me a phone call to discuss all of the disability health related things. The
phone call basically went with “Ah, I see you have depression and anxiety, is there
anything we can do to help?” At which point, I didn’t really know, because I’d never had
the opportunity to have accommodations made for my health. So I listened to what he had
to say about it and what he could do for me, and I was amenable to that. We discussed the
lab situation, because I did pharmacology, we worked in the lab a lot. He touched on
the chronic pain, and said that there are stools to sit down on, and there’s all sorts
of little accommodations that can be made within the lab. He wanted to ask whether I
used mobility aids which I did a little bit. He asked if anything had changed in regards
to pain, whether I had a diagnosis between applying to university and going to university.
I hadn’t, I just tried to push it to the back of my head and not really care too much about
it. Bad idea. The cold urticaria was largely ignored because he didn’t really know what
it was, whether it was real, whether I was just joking, and I didn’t really know how
it would affect me. Up until that point, my antihistamine regimen had been really good,
it was working for me, and I came from a state school in Cornwall, we didn’t have that much
equipment, so what I was doing was very basic and it had never affected that before. So
my first year. I moved north, from Cornwall. I was so shocked to find the temperature in
the city was higher than down south in “sunny old” Cornwall. Sometimes I didn’t even need
a coat, and it was September, and I was like “this is magical”. I was a very different
person back then. Easily pleased. Cold urticaria wasn’t so much a problem, when I first started.
My chronic pain became worse, and worse, and worse. I have vivid memories of one day I
was in bed, I was missing my lectures because I was in a lot of pain. I was feeling so guilty
about missing this thing, this magical opportunity that I’m paying for, and they expect me to
be there, but here I am, missing it because of pain, that we don’t even know why. So even,
is it even real? at this point. Does everybody feel like this every day and I’m just not
able to ignore it? I remember breathing hurting so much, that day. My breathing was very shallow
because I was trying to avoid the fire of a full breath, my ribs were just so painful.
I couldn’t move, I couldn’t sleep, I couldn’t sit up, I couldn’t do anything. I couldn’t
even eat. At one point I was crying and that hurt even worse, so I stopped crying pretty
quick. It wasn’t until I spoke to a friend of mine who also struggles with mental health
problems. He told me that this thing exists called the statement of access. He explained
that even with mental health, physical health, all of that, it’s a statement that gets sent
to all of your lecturers that says “this person struggles with their health”, you can get
various accommodations on there, so mine were: I wouldn’t get penalised for missing an unassessed
lab, I could have extra time in exams, I could get deadlines extended if I needed to, if
my pain was really high on a particular day, and it was affecting my mobility, I wouldn’t
be stressed about running to a lecture because “oh they’re not gonna let me in”, they would
let me in, because it’s not something I could help. It was in my access statement that just
don’t. That I was trying, and I was always trying, I remember one of my lectures I turned
up 59 minutes late to a one hour lecture. I just struggled so much getting there that
it took me so long, but I didn’t just wanna skip it because I wanted my lecturers to know
that I was serious. This was in like my first week as well. So I wanted them to know that
I was serious, and I wanted the chance to explain that look, I just- my body was not
cooperating that day, they were OK about it. One of the biggest accommodations that I got
was extra time in exams. I got to sit in a smaller room with extra time and stop the
clock breaks so I could rest my arthritic and achy hands, and I could medicate if I
needed to, and the room being smaller it could be heated so I wouldn’t struggle with my cold
urticaria that much, which was like the first sort of acknowledgement that uni gave me to
cold urticaria. As everybody tells you you will, I made great friends. Even if they didn’t
understand all of the things I had going on, they helped anyway. I fell ill one night on
a club night, and instead of just being weird and awkward and super serious, they were making
jokes. Which was nice, because it kind of ended the awkward. They’d give me the work
that I missed, I wasn’t missing out on too much by not being there. We all studied together
for exams, which I thought was really sweet, with the brain fog and the fibro fog so things
were not going in, so we all studied together to make sure that it would work. We kind of
got around that all together and it was really nice, it was like a nice show of solidarity
that we all did it together. I’m so grateful and privileged that that happened to me, and
if you’re all watching this, thankyou! Second year. I won’t lie, barely remember. Pain took
over most of that year. Chronic pain obviously increased. I had a really hard time with this
shoulder. I could barely move it. I would just sit at my desk, at night, trying to do
work, and my arm would be at this sort of angle, but it would hurt, every time I had
a bag on, it would hurt, couldn’t lift it higher than about here. It got so bad that
I couldn’t carry my bag around campus. One of my friends just without asking or needing
to be asked, he just stepped in and carried it for me. More often than not. I will never
forget that, so if you’re watching this, thanks. It was our normal kind of, in that group,
that I would struggle, and they would help. It would be weird if I didn’t need help. After
having MRIs, university actually listened to me [slurps tea] all the accommodations
were so much better. I had something I could write to the Disabled Students… God what
is it called? There’s a pot of money for disabled students and it gets given to them in the
form of like actual money to pay for carers or getting to university, or you can get it
in the form of software and hardware, I got that option. I received a dictaphone so I
could record my lectures for when my hands were too painful to write anything. I also
used the dictaphone for if I wasn’t there, I could give it to a friend, I could get my
lectures recorded, I also had voice to text software, and some transcription software
which was also very useful. I was missing out less. That allowed me to focus on extra-curricular
activities. My antihistamine regime was still working, but it was getting to a point where
it was starting to work less. The airway thing was starting to become a problem. Third year.
My third year was a much more hands on year. Um, so we were doing more practical things
in the labs, I was having to work with ice a little bit more, and the pain was still
getting worse. The academic year started I think it was either the last week of September,
or the first week of October. I don’t remember dates. And by late November, I was reliant
on a wheelchair. Third year was by far the hardest year, and I don’t just mean academically.
So a lot of my friends from that amazing friendship group had gone on to an industrial placement.
That left me kind of on my own in lectures, and trying to get around campus. I ended up
being a bit left behind, I was late to a lot more lectures, because campus was not very
accessible. The isolation was real. It was a big struggle, so my depression went up,
my anxiety went up, pain went up, and of course I was using my upper body more, so pain went
up there and the pain in my legs did not get better from not using them, I was just in
pain but in a different place. I could actually get to the lectures. At this point, I took
up wheelchair basketball. Cold urticaria would act up in the sports hall, I was struggling
with wheezing, so in a cold sports hall, breathing in cold air very very quickly… Very very
wheezy and I feel like that kind of kick started the decline of my CU management. Being more
hands on in the lab, means more exposure to ice and things that have been on ice. I didn’t
necessarily come up in a rash, but i- my hands would swell up quite badly, they would itch,
but I just kind of accepted it as a part of my life. I just stayed itchy, which was silly
looking back, because if you’ve seen my vlogging with cold urticaria: fexofenadine edition,
these drugs have changed my life. And if I could’ve had that two years ago, that would
have been great. My attendance sucked. [Bone pops] Between being allergic to the cold,
being in chronic pain all the time, and it just getting worse and worse and worse, using
a wheelchair being relatively new to me, and incredibly difficult, anyone that says you’re
taking the easy option by going in a wheelchair, that’s a lie! I caught up, and eventually
I graduated with a 2:1 BSc honours in pharmacology in my wheelchair. With that grade in my BSc,
I was accepted to study a masters by research in pharmacology. So it’s less exam based,
more like, practical based. Which is good, because Fibromyalgia makes my memory suck,
so how I passed my exams I will never know. So I started my MRes still in my wheelchair.
That is completely fine, I love my wheelchair, it’s mine, I call her Betsy. My attendance
was great, I worked really hard to go because I loved doing it, it was important, the content
was more in depth. But with my pain getting worse, campus being even less accessible,
partly due to the geography of the place, and being with a group of new people that
didn’t necessarily know me, I kind of felt a bit weird asking for help, and asking for
a push. In December, the temperature dropped. Most of January through March I was house
bound; depressed, anxious, itchy, and in pain. The pain keeping me in the house, and then
when it wasn’t the pain, it was the cold urticaria, if it wasn’t the fibromyalgia or the cold
urticaria, it was the anxiety of like- what if the pain changes, what if the temperature
changes? And then if it wasn’t the fibromyalgia, cold urticaria, or anxiety, it was the depression
of “this is my life now”. I kept up with lectures from home, because they introduced lecture
capture. Only half of my lecturers actually put their content on the website, only half
of those had usable lecture notes, so it was a struggle. The problem with the cold worsening
is push rims. They get very cold. You can’t really wear gloves- like proper gloves, because
it changes your grip on the wheels, and snow and wheelchairs they just don’t mix. Like
trying to push through snow, you have increased resistance, so it’s actually physically harder
to push, and the wheels get colder. And then my hands get way more swollen. But then one
snow day, I rebelled. Why wouldn’t you? I was just so sick of being cooped up in the
house, that I went out into my back garden with my housemates, and we took some rather
lewd photographs. If you’ve ever seen the film Calendar Girls, kind of like that. I
was like “Oh yeah, it’ll be fine, I’ll only be out 5 minutes” Yeah I was wrong. And then
I had my first systemic reaction, where it wasn’t quite anaphylaxis, but I was hit with
fatigue, dizziness, full body itching, and wheezing. Oh the wheezing! I was feeling so
beaten down by chronic illnesses, that it was keeping me from my passions, cos I’m a
massive science nerd, you should know this already if you’ve watched my other videos
where I go off on one. I was missing out on doing the thing that I was here to do. And
it was really messing with me. Screw chronic illness, screw cold urticaria, I’m gonna do
something fun. And then once I’ve proved to myself that I can, I’m gonna go and overcome
my chronic illness, and I’m gonna go back out there. Hmm. Yeah, I think the overcoming
rhetoric is very damaging to people with disabilities like myself because then we go and do silly
things like that and end up making ourselves poorly. After that, chronic pain continued
to get worse. I decided to finally see my GP about it. I was given a new doctor. She
is incredible, I’m so [sigh] I’m so grateful and lucky to have her because I explained
everything, and then she looked at my notes and said “yeah, you actually do have Fibromyalgia,
they wrote this in the notes, did they not tell you?” No they didn’t. Nobody let- no-one
thought to let me know on that one. She looked at me and said “So you’ve been in pain for
10 years, and nobody has offered you anything apart from Ibuprofen?” Which I’m allergic
to. And said “It’s about time we started you on the real drugs”. So… Amitriptyline! Amitriptyline
gets a lot of bad press, I personally recommend at least giving it a go. It does kind of turn
you into a bit of a zombie, but it’s temporary. After 3 days of being a complete zombie, I
woke up and I took my first pain free breath. Don’t get me wrong, I was still in pain, I’m
still in pain now, my ribs still hurt, and breathing still hurts now, but that breath,
I will remember that one. Because, every single ‘first breath of the day’ moments before that
had been like a truck ploughing into my chest and reminding me I was still alive. Because,
if I was dead I wouldn’t feel so much pain. But that breath was like “wow!”. My attendance
at that point still kind of sucked. Because I was still a bit of a zombie, but I was back!
I could do more lectures. So it wouldn’t be like a complete write off of the day, I might
miss the first lecture, but I’d be there for the second, third, fourth, fifth, and sixth.
While I was adjusting to the drug, and waiting for the temperature to warm up, life got better.
I got back on it, and I completely nailed my research. It wasn’t until that September
that I realised how much the mask helps. If I had realised sooner, I would have done it,
that would’ve changed my life. After my final deadline and presenting my research, in December
2018, I finally graduated with my mask, with an MRes in Pharmacology with a commendation.
By that I mean, I was so late to my graduation ceremony that they wouldn’t let me in, not
even to sneak into the back and watch, so I took a picture next to a sign and waiting
for my certificate in the post. Because apparently your disabilities only matter when you’re
timetabled. That’s my chronic illness at university story. It is difficult. It’s so hard. It’s
so much harder than just being a healthy student. I don’t think it’s easy for anyone, but the
chronic illness struggle definitely brings a whole host of difficulties to being at university.
I wish that there had been more of a disability movement at the time. That’s kind of why I’m
doing this video is anyone with chronic illnesses that is thinking about going to university,
or they’ve just started, or they’re applying, I want to help! It’s hard but I’m so glad
I did it, and I’m so proud of myself for getting through, it can be done, but also in the same
breath, there is no shame if you didn’t finish. The university institutions as a whole need
they need to do better to support you. Obviously that is very blanket advice, and y’know, it’s
not for everybody. Some people just go to university and they realise they don’t like
it. Like this video, drop a comment, ask any questions, um share your experiences I would
love to give those a read. Don’t forget to subscribe to my channel for more videos about
chronic illness, cold urticaria, mental health, cats… Ring the bell to get notified every
time I post. Videos go up every Saturday at 6pm, there is a series coming soon for Allergy
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