Coping with going back to University
I'm struggling to figure out the difference between tiredness and laziness. Sometimes I’m like, “You’re ill, you need to cut yourself some slack”, but then other times, I look at myself and I’m like, “Maybe this is too much slack - it’s been a whole week and you have done absolutely no uni work, your room’s a tip and you’re out of clean underwear.” Boldly I have decided that in conjunction with balancing the final year of my degree with my extreme tiredness, I am also going to direct a play that I’ve written and named “Clean Shaven Pubes” - with a cast of thirteen, which adds no benefit or credit towards my degree. Nevertheless, realistically, I am finding that I have gained more life skills from doing the play than I have with anything else I’ve done during my time at university and hopefully it will be for a good cause, so should be worth it. (The play is aimed to encourage young people to see a doctor if they are experiencing any unusual symptoms and to raise awareness for invisible illness).
Returning to university has been a lot harder than I was expecting it to be. Obviously there are benefits to coming off the steroids, because my face no longer looks like a puffed up marshmallow. But without suffering the side effect the steroids provided of increased appetite, I’m really struggling to eat and my weight’s going back down again.
What symptoms am I currently struggling with?
I’m delighted to say that, with one or two exceptions, my
shits have been consistently solid for at least a month now. It is a big relief
to be able to see the positive effects of my medication and to know that my
symptoms are calming down. Furthermore, I am able to now leave the house for
multiple hours at a time without fearing that I’ll find myself stuck without a
toilet and having to try and hold it in. This is something that used to make me
very nervous. Owning a RADAR key for disabled toilets and knowing that I am
authorized to use them provides me great reassurance when leaving the house for
long periods of time. Unfortunately, in the couple of times that I have had to
use them on campus, there have been people who have asked me if I am disabled
and I was laughed at by a group of boys once when their friend was waiting to
use it and I was in there for a while, and I came out, not looking disabled.
Looking back, I do kind of wish I had slapped them, but in
the moment I wrongly felt really embarrassed and walked passed them really
quickly; I kind of forgot that I did have the right to use it. I understand why
they laughed because I guess while they were waiting for a long time, they
weren’t expecting a skinny girl wearing sportswear to walk out, but I did have
diarrhoea and then almost threw up in there afterwards. Subsequently, I suppose
there just needs to be more awareness surrounding disabled toilets emphasizing
that not all disabilities are visible. I probably still am having to go to the
loo about four times a day and perhaps a lot does come out of me, but I’m not
getting any tummy aches so it feels pretty normal.
My current issues with food
I want to talk as honestly as possible in these blogs and
want to include my personal struggles surrounding food. I understand that many
people struggle with food, eating and weight in many different ways. Eating is
the biggest issue that I’m having to deal with at the moment and I know that my
circumstances and situation is unique, but I do want to share what I am
personally experiencing. My symptoms are not constant and I have days when I
have no problems at all with food. I think that difficulties with food can be
hard for others to understand if they are not experiencing them first hand, but
it’s important not to be embarrassed if you are struggling in any way because it’s
not anything anyone chooses to go through and it can cause simple aspects of
daily life to become a lot harder.
Sometimes just hearing people talk about food makes me feel
extremely nauseous and want to wretch. I don’t want to look at it and I don’t
want to smell it and I don’t want to hear about it. Sometimes I’m fine until
one person mentions a food that’s particularly rich or greasy, like pastries or
fried chicken, then I might need to close my eyes and take a few deep breaths
to myself so that no one notices I’m feeling sick. I avoid going into big
supermarkets and consequently it is often more expensive for me to eat because
I never have any food in my house; I usually just buy sandwiches or fast food.
I also don’t want to cook because I don’t want to have to smell or look at whatever
I will be eating for that long beforehand as it will put me off.
Restaurants are really difficult places for me to be in and
can be a really stressful experience. I can feel fine when I go into them, but,
like most people in restaurants, I always push myself to eat as much of my meal
as possible until I feel full.
Coping mechanisms I have developed to deal with my issues
with food:
(I’m not saying that these are the right things to do and
different things will work for different people and different experiences)
· If my friends are going to a chicken shop after
a night out, sometimes I’ll stand outside the shop and wait for them, facing
the opposite direction so that I don’t have to look at it
· Asking my friends to carry my food for me
· Walking away from places where food is present
· Asking my friends to move my left overs away
from me/hide them
· Taking deep breaths
· Walking away from my food and then coming back
to it later
· Drinking chocolate milk or full fat milk
Sometimes it feels silly to have to ask my friends to carry
or hide my food from me and quite often I feel too embarrassed to ask, but
sometimes I feel really distressed and it really helps me a lot, so I think it
definitely is worth asking. Sometimes I have thrown up and then continued to
eat, I know it’s not a healthy thing to do, and I try my hardest to avoid it, but
sometimes due to my nausea, I really do feel like I need to throw up and then I
feel so much better afterwards. I really don’t recommend doing this and I do it
very rarely. When my parents took me out to a fancy Indian restaurant for my 21st
birthday, I really didn’t want to have to throw up the really nice food that
I’d eaten, but it made me feel more comfortable and allowed me to enjoy myself
and try more of the different dishes. For me this felt like a better option
than being stuck sat in a strong smelling restaurant, surrounding by food
whilst feeling nauseous. My parents have subsequently suggested that I discuss
this with a doctor.
My experiences back at university/my attempt at an iron infusion
My puffy face went down a lot quicker than I was expecting
after coming off the steroids, however I do still have the acne. After coming
of the steroids I feel a lot more confident and with ownership and control over
my body. It was a big relief when my face went back to normal so quickly,
because although it didn’t necessarily look bad before when it was more puffy
and round, I like to look like myself and to not have the evidence of my
medication displayed on my face. I have noticed my weight going down at times,
but now that I understand why, I feel I am able to monitor it and stabilize it
in a safe and healthy way, drinking full fat milk and eating full fat butter,
yogurt and cheese. I am also still taking vitamins, calcium and iron supplements.
I attempted to have an iron infusion. The machine/drip thing
was on for about two minutes, enough time for me to take a snazzy selfie:
But basically as soon
as the iron started going into my arm, I suddenly started feeling really sick
and really hot and really faint. And apparently I went bright red. So I said to
the nurse, “I feel really sick” and then I kind of dropped forwards over my
legs. Luckily there was a doctor from the haematology department next door and
they turned my iron off and put me on oxygen. It was all very dramatic for
about two minutes and was quite scary for about thirty seconds, but I knew I
was in good hands and as soon as they put the oxygen on me I knew I was fine
and even took another cheeky selfie for the blog whilst the doctor was trying
to ask me if my throat was closing up. I think a reaction like this is very
rare and I don’t want to worry anyone else who ever has to have one because I
felt completely safe and so well looked after by the NHS staff who were on hand
and ready in case anything did go wrong. Consequently, I don’t think I’m allowed to have any
more iron infusions now and my IBD nurse said that I will feel tired, but I’ll
just have to keep taking the iron supplements and eating lots of red meat.
I am struggling with keeping on top of my university work and I feel guilty telling my lecturers this considering that I am also holding rehearsals for the play I’m directing, ‘Clean Shaven Pubes’ from 6-10pm, three nights a week. But, I refuse to let my illness prevent me from putting on my play because I’m really proud of myself for writing it and I’m delighted to see how enthusiastically and passionately my cast are throwing themselves into the script. I think it has the potential to be something really special. I am really enjoying my time back at university and am so grateful that modern medicine and the medical team I have working with me has enabled me to come back feeling so healthy and strong.
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