What's it Like Being a Student with Chronic Pain?

Being in pain isn't fun.  When you're young, you get days off school.  That may look fun when it's not you, but you miss quite a lot.  And when you get back after having a week or so off, everyone asks you where you've been.  It gets annoying fast.  But that's secondary school for you.  My mum was always worried that social services would get called because I was always ill.  I think the only fun thing about being ill at school was having a pass that allowed me to leave lessons 5 minutes early with a friend to assist me before break times to beat the rush of students so I wouldn't get jostled (the 'Get Out of Class Free' card as we called it).

By the time college came around, I'd learned to manage my pain and got 100% attendance, the first time since Year 1 probably (I had chronic tonsillitis so I was always off with sore throats, and then my knees and hips started off my arthritis time off in Year 2 or 3).

When looking at universities, I found the best thing to do was to talk to the disability advisor about what they could do for me and what I would have to do before I arrived, if I went to that university.  They were very happy to help, and amazing listeners.

I was advised to apply for D.S.A. (Disabled Students' Allowance) on the grounds of my arthritis.  I have to say that it has helped greatly knowing I had note takers available if I was unable to go to a lecture, and having timed breaks and extra time during an exam.  I did receive timed breaks and extra time during my A Levels too, as was decided before I arrived at college.  I had monthly meetings with the disability advisor at college, and similar meetings with my disability advisor at university.

My university tutors all know who I am.  I notice that they look out for me whenever I walk into a lecture theatre.

It is difficult always being in pain.  Though my friends look out for me, they do not understand my pain.  They do try.  Some days I look fine, though not so much on the inside.  I walk slower than the rest of my friends, and I always feel like I am being left behind.  My boyfriend usually slows down and waits for me while the rest continue on, but not always.  Some days I do look ill; pale, dark circles under my eyes, even the way my voice sounds and how I walk.  My mum says I waddle like a pregnant duck (thanks mother).

It's been nearly a year since I was diagnosed with Crohn's disease.  The first few months before I was diagnosed were absolutely terrible.  Luckily my education wasn't affected by this as it happened during my Placement Year.  I was extremely worried that I would lose my place, but luckily I did not.  It has, however, worried me about any future jobs I may acquire.

Pills, pills galore.  I was taking 1000mg of ibuprofen three times a day every day during secondary school.  I was allowed to visit the nurse to take them whenever I needed them, or if I just needed a break.  I dread to think what that might have done to me.  Then, when I first saw my rheumatologist, I was put on all sorts of medication.  Methotrexate, hydroxychloroquine sulphate and azathioprine are a few that I have taken in my teenage years.  Those ones have truly terrified me.  My overnight bag that I take when I visit my boyfriend sounds like a baby's rattle with all the pills I have to take.

So, to answer the question of the title of this post, it is very difficult being a student with chronic pain.  You have to keep on top of your lessons/lectures when you are not there to receive the education in person (one teacher even went as far as thinking that I was skipping his classes).  Some teachers (head of house/year, your tutor etc.) really do want to help you, and it's these teachers that you've got to tell what's going on in your life and if you're falling behind.  You have to recognise who to ask for help: teachers, parents, friends.  Never be afraid or embarrassed to ask for help.  People may expect a certain amount from you, especially if you have shown that you can do extraordinary things on your good days.  I'm not saying to not always be extraordinary, but just be careful because they will end up expecting that when you are not so good (especially if you have hidden illnesses like myself; I would nearly always look well when I wasn't).

Don't let your pain rule you.  I have always tried to soldier through my pain, and it will occasionally come to bite me in the bottom.  The one thing I will always do is get out of bed; it's so easy to just stay in bed because it hurts to move, but once you get moving, things get better.  The world is going to continue without you if you just stay in bed, so go out there and enjoy yourself.  You may not be able to do much, and don't over-do it either or else the next day is going to be even harder, but try and do at least one thing each day (other than get out of bed).  Call your friends, or meet up with them.  Go to the park.  Give your grandparents/parents a hug.  Do anything that will get you out of bed.  It helps.

New Challenge!

So I set myself a new challenge last weekend: wake up at 6:15 on weekdays and 7:00 on weekends (because nobody is up at 6:15 on the weekend) for 30 days and see how I feel.  I did really well last week; I woke up at 6:15 every day.

I got a lot done today because I got up so early.  I had my hair trimmed, did some shopping, went to the library and the post office.  All before 11.  Usually I'm not up until 11.  It gave me the rest of the day to work on my computer (the SSD is corrupted I think so I lost my OS as well as some games.  Luckily most of my data was on my 2TB HDD).  I managed to get Windows 7 onto a partition on my HDD made on Ubuntu.  Got to love USB Live Ubuntu.

This evening my fingers, feet and knees have started aching.  My fingers are warm and it hurts to move them, as with my feet.  It's only a dull ache at the moment, but it's worse than usual.  I'm not sure if this is a side effect of waking up early, but I kind of hope it is.  Because the only other possibility is an arthritis flare.  It's too late to be virus related because I had a cold last week and it should be out of my system by now; I'm not showing any symptoms of the cold any more.

Wednesday Wonderings: Trains

I know today isn't Wednesday, but I was out the whole of yesterday and didn't get a chance to write a post.

I'm on the train. A lot.  It feels like I'm on the train at least twice a week (partially because for the past 3 weeks I have had return journeys).  I need an aisle seat for my arthritis and Crohn's - it makes things easier if I need to rush to the toilet or get up and stretch - so I always choose it as a preference when booking my tickets.  One thing I do not get, though, is why one of the preferences while booking train tickets is to sit at a table.  Having a table seat restricts your leg room and you are facing at least one other person.  No one wants that.  The only time having a table seat is good is when you have the whole table to yourself.

Rant over :)

Lonely vs Alone

People may not realise it, but feeling lonely and feeling alone are two very different things.  Feeling lonely is when you feel like you don't have people around you/friends, or you don't have a social life - lacking.  Feeling alone is when you feel like you're the only person in the world - on your own.  For most people, being on their own is a god send; it gives them a chance to do things that they couldn't do before or just some peace and quiet.

I felt very alone this time last year (Mar/Apr 2012).  I was having a major flare-up of my arthritis and it felt like the world was going on without me.  I didn't feel lonely because I always had my family or friends to chat to.  Okay, there is a big difference when you live 200 miles away from everyone, but Skype makes things a bit easier.  Anyway, when you have a chronic illness like arthritis (I didn't have Crohn's at the time) and all your friends are all healthy, you start to feel like you're the only one who has something wrong with them.  My friends don't understand that I can't walk for very long, and I don't think they'll ever understand.  My boyfriend and best friend have even said that they can't empathise because they have never felt what I feel.  I ended up having to have counselling because I just felt so down and alone.

It's silly really what you end up feeling.  I'm sure that people who don't have chronic illnesses feel similarly occasionally,  but when you don't know anyone else who goes through you do and who knows what you are going on about, it really does feel like you are the only one in the world with the problem.

Challenge Accepted

I set myself a challenge today - walk a 10km race.
I usually walk about 1km a day (I get a lift to work) so I'm 1/10 of the way there.  I have until 11th May, so I reckon I can do it.  I've just got to buy some proper trainers first.
I'll be walking for charity, F.O.R.T.H. and Crohn's and Colitis UK.  If you would like to donate please use the button below or on the right side bar. Thank you.