Youtube Vlog

So I thought I'd try my hand at vlogging as well as blogging, so here's my youtube channel. Please go have a look around, there's only one vlog up there at the moment but I'm working on more.

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.

I Missed My Train Today

It was the last day of my boyfriend's 21st birthday.  A very warm day indeed with highs of 28 degrees Celsius.  It was a wondrous day full of family and friends and lots of cake.

Those are not ice creams but cupcakes inside ice cream cones topped with dairy free butter cream and an assortment of toppings.

We came across a traffic jam on the M25 on the way to the train station after having to cut my evening short due to my impending train journey.  The look of dread was a common look among my mum, sister and myself as we knew, at that moment, I would not make my train and we may be travelling to Loughborough by car.  My mum suggested I rang the train station to see if I could catch the later train, but seeing as though the station is on the way to Loughborough, we would just slip in and see there and then.

20 minutes passed and we were only moving at a snail's pace.  Then 2 unmarked police cars came hurtling past on the hard-shoulder, followed by a Highways Agency 4x4 and 2 incident support trucks (or tow trucks really but that's what they had on the side).  Another 10 minutes passed and we could hear a siren, possibly an ambulance we thought.  It was behind us, and not getting any closer and we couldn't figure out why.  A quick look to the hard-shoulder told us that the road works currently occurring on that stretch of M25 (like the rest of it) had closed the hard-shoulder.  My mum, along with the other drivers stuck on the road, tried to move as best they could with the limited amount of room and 2 fire trucks drove past.  Then another 2 came along.  As we slowly reached the tunnel before the A10 turning, we could see that 3 of the 4 lanes had been closed off and cars we slowly being allowed through the single lane of the tunnel, and the accident.  Another 2 fire trucks slowly edged their way through the small gap between cars and the cones the Highways Agency had used to close the lanes.  As we passed the accident it looked like a mini-van had gone into the back of a 4x4, and someone was on a stretcher (I know, we're nosey).

After that it was smooth sailing to the train station.  I was 15 minutes late to my train, so if the mini-van hadn't gone into the back of the 4x4, we would have made it with 15 minutes to spare.  Luckily, I had the right type of ticket so I could just jump onto the next train.

After we passed the accident, the clockwise lanes were shut due to the road being uneven after an accident (I assume the accident part).  This was the couple-mile long queue.  I'm glad we weren't in that.

 Here's me thinking my life is so uneventful.

Challenge Failed

Well I only lasted a week and a half.  I'm really upset with myself.  I'm not sure if I could have continued with it or not though.

Yesterday I woke up and everything hurt - my muscles and joints.  My muscles feel like they are all bruised and my joints just ache.  I'm still getting on with things though, going to work and such.  I'm not sure what brought on the ache, I'm just hoping it's not a flare up.

My boyfriend's 21st birthday was a success last week.  We went to London for the day, explored Camden market again, nearly bought the whole of Forbidden Planet, and ate our weight in ribs at Bodeans.  On Saturday he had all of his dad's side of the family round for a BBQ which was very nice indeed, and this Sunday he's having his mum's side of the family round for another BBQ.  More trains!!  I love trains.

My computer is still trying to fix itself.  Good old fashioned Check Disc.  Everyone I've spoken to about it though have said to just scrap it and buy a new and more reliable one.  I think I will once I've backed up all of my data though, if I can back it up when it finishes.

Oh well... Train soon :)

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.

It's Supposed To Be A Good Thing, Right...

When your doctor tells you that you are too well to go onto a different, and possibly better, medication?  That's what my gastroenterologist told me back in April, but I didn't feel well and still don't really.  True, I haven't had any really bad flare up symptoms, but it's the annoying little ones that get me down.  They're like small insects always buzzing around me.
My arthritis symptoms already cause me to have very little energy throughout that day, what with my immune system always fighting my joints and whatnot.  I call it my background noise.  I wouldn't know what life would be like without it.  I rarely get an arthritis flare up anymore, which is really good.  My physiotherapist tells me it's partially because my pain threshold has increased dramatically since I first saw her when I was 14.
I know people with Crohn's disease who are a lot worse off than I am in regards to symptoms.  I send my love to you all.  My worst pain at the moment is just severe stabbing pains in and around my abdomen.  They happen frequently, and I'm sort of getting used to them now but they do stop me in my tracks when they occur.  The most annoying symptom is having to rush to the toilet several times a day (sorry for any images this may have conjured).
My current medication is alright - I'm on 50mg of 6MP and 2g of Sulfasalazine - but I'd prefer not to have any sudden stabbing pains.  I'm sure that if I wasn't on these medications that I would be a lot worse.  That's what I've got to remember whenever I complain about my pains.

Am I Really Of That Age?

Yesterday, a friend from Primary School had her first child.  She's the same age as me, 21.  Many of my friends from Secondary School have also had at least one child by now.

One of my best friends from Secondary school and I go out for lunch whenever I'm back in Essex.  It's like a tradition now.  We catch up (it's usually every 6-odd weeks we see each other), talking about our boyfriends and what not, and sometimes talk goes to our friends who are now mothers.  I don't really see them any more, but she sees them often.  She tells me how its always baby this and baby that and 'I can't come out today, I don't have a babysitter' and that she's a bit fed up with them because they don't seem to have their own lives any more.  Fair enough, having children does that, but we're still meant to be enjoying our lives as our own, still growing up.  We, my friend and I, aren't looking down on them or anything for having children - it was their choice.  We then go on to talk about our futures.  She's got enough money now to go towards a house with her boyfriend of 2 years, and my boyfriend of 4 years and I are talking about jobs and houses for after graduation.  It's all rather exciting.  We're both in similar points in our lives, and it's nice to talk to someone about it who isn't a guy (99.9% of my friends are male).  It may seem archaic nowadays, but we believe in finding a man you want to stay with, moving in with them, getting married and then having children.

Anyway, I got my usual monthly medication from the Pharmacy on Tuesday.  For the first time ever, I was asked if it was okay for one of my bottles to not have a child safety cap.  Am I of an age now where people may assume I have children?