An unfair share of the cake?

So I've just caught up on Newsnight from last night as the inspirational Kris, founder and CEO of CoppaFeel!, was discussing living with cancer and the importance of awareness and early diagnosis.

It was during this interview that Jeremy Paxman asked a question which really struck a chord with me:
"Do you feel that because cancer makes a talismanic, terrifying impression on people that you somehow have an unfair share of the cake?" 

Before I say what I am about to say, I want to make it clear that I am not trying to take anything away from the seriousness of cancer and the devastating effect it has on a person and their family and friends. My grandpa lost his life to lung cancer eight years ago and I wouldn't wish what he went through on my worst enemy. I'm also not intentionally singling cancer out - it's merely an example and I could just as easily use several other diseases in it's place. I'm not trying to compare my condition to cancer, or any other disease for that matter, because they are all terrible in their own right.

In his question Jeremy Paxman was referring to the funds that cancer charities receive, but my frustration lies more with the perception of my disease. Everybody knows how awful cancer can be. People hear the word 'cancer' and instantly fear the worst, or feel sorry for you if they find out you have the disease. And quite rightly. But when I tell someone that I have rheumatoid arthritis, their reaction is usually to either question whether I am 'too young for that', or to brush it off as insignificant, or both. Perhaps it is because everyone knows that it is possible to die from cancer. Few people know that it is possible to die from rheumatoid arthritis, whether it be from complications involving the immune system, or treatment, or because the disease can affect the heart and lungs. Or perhaps it is because people automatically focus on the word 'arthritis' and the connotations that come with that, such as it being 'a few aches and pains' or it's supposed association with the elderly. People don't realise the extent of the pain sufferers of the disease, like me, go through on a daily basis. I have pain every day. I dread waking up in the morning because I know that the pain is going to be worst at this time of day. I fear the simplest of every day tasks that most other people take for granted, such as opening a bottle of Diet Coke, getting in and out of the bath, or changing my daughter's nappy, because I know how much pain it is going to cause me. I have to make choices such as deciding between being in constant severe pain and risking further joint damage or taking medication which makes me vomit and lose my hair. And on top of all that I have to cope with the constant, extreme fatigue that the disease inflicts. The worst part of it all though is that there is no cure; I will be living with rheumatoid arthritis for the rest of my life and inevitably have many more hospital visits, treatments, and operations ahead of me. And yet I am one of the lucky ones; I can walk, have very few visible joint deformities, and have so far been able to lead a relatively 'normal' life.

Whatever the reasons, the fact is that to this day many people still do not take the disease seriously, and for that reason I find myself being envious of cancer's share of the cake.

Here is a picture of a cake, for no reason other than the fact that I like cake. 

Some things I need to tell you

1. Please stop telling me that my daughter 'has' my cheeks. I currently have steroid cheeks. Any resemblance is purely coincidental, and all you are achieving is reminding me that my face currently resembles that of a chubby, albeit very cute (see below), baby.

2. A couple weeks ago I went to University College London to attend an Advisory Board meeting for the Centre for Adolescent Rheumatology. Adolescence can be a pretty turbulent time as it is, in terms of physical, emotional and educational development, let alone with the added trauma of living with a chronic illness such as rheumatoid arthritis. The Centre aims to improve the health and well being of adolescents and young adults with arthritis (and other rheumatic diseases, too) through cutting edge research. It's the first of it's kind and I am privileged to sit on the Board representing young people with arthritis. You can find out more here:

www.centre-for-adolescent-rheumatology.org


3. Apparently 'rheumatology' isn't a recognized word on Google Blogger.


4. I am currently not very well, and haven't been for a few weeks. I'm still waiting for my new treatment to start, and in the meantime I am surviving on a cocktail of steroids, ibuprofen and tramadol. Joints that currently hurt include, but are not limited to, ankles, knees, hips, wrists, shoulders and neck. I can't remember the last time I woke up without being in agony.


5. It may come as a surprise to you, but not everything about having arthritis is bad. Since my diagnosis I have been lucky enough to meet some inspirational people, including an incredible lady called Kris. Kris was diagnosed with terminal breast cancer at the age of 23. Since then, via her charity CoppaFeel!, she has dedicated her life to encouraging young people to get to know their boobs so that others do not have to suffer the same fate as her. If you have plans tonight, cancel them, and watch her documentary - Kris: Dying to Live - on BBC3 at 9PM. Or if you're reading this too late, catch up on iPlayer. And then start checking your boobs.


6. Not one person nominated me to do a 'No Make-up Selfie' for charity. I am trying not to take this personally.


7. And finally... That Girl With Arthritis now has a Facebook page. If you like what you read, or just want to do your bit in the name of awareness raising, please 'like' the page and spread the word. If you do I'll give you a share of my winnings when I win Euromillions this week.*

www.facebook.com/thatgirlwitharthritis

*Win not guaranteed, mostly because someone named Catherine Bull already won Euromillions a couple of years ago.

Is that why your face is so round?

Recently Isla and I celebrated mummy-daughter hip week, which essentially involves a two-yearly fake hip review for mummy and an ultrasound scan for daughter. I'm pretty sure it'll be the 'hip' new craze soon. Ugh, sorry.

As you may remember from two years ago, every two years I pay a visit to the surgeon who performed my hip replacement operation. It's now been six years since that life changing op, and due to my age and my active lifestyle even the cleverest of surgeons can't predict how long it will be before I need it replacing again. Pretty much everything about this appointment, whether it be my emotions on the day or the radiographer's 'Aren't you a bit young for that?' reaction to learning that I have had my hip replaced*, was exactly the same as two years ago so to save my arthritic hands the trouble of typing it all again, have a read of this instead. Most importantly though, like two years ago, I STILL HAVE TWO GOOD HIPS.

*I'm pretty sure she was the same radiographer that x-rayed my hip two years ago, asked me the same question two years ago, and looked confused two years ago.

When Isla was born she was found to have a slightly clicky right hip. Despite knowing that, although children can develop arthritis at a very young age, they are not born with it, my boyfriend and I couldn't help but exchange a slightly worried glance/awkward laugh at each other when we were told this. I wouldn't wish my disease on my worst enemy, let alone my own child, but I have to live with the knowledge that Isla (and any other children I may go on to have) is more likely to develop rheumatoid arthritis because of me. Despite being a rational doctor and semi-rational human being I know that every time she complains of the slightest pain in any of her joints at the back of my mind I will be panicking that this is the start of juvenile onset arthritis. This disease has taken away any chance I had of being a rational mother.

Clicky hips at birth are actually pretty common though, and more often than not nothing to worry about. Just to be sure though Isla had to have an ultrasound scan at 12 weeks old, which was absolutely fine. The consultant who performed the scan however was ABSOLUTELY NOT FINE. Our conversation went something like this:

Him: "Is there any history of hip problems at birth in your family?"
Me: "No, but I have rheumatoid arthritis and I had my hip replaced when I was 20."
Him: Are you on steroids?"
Me: "Unfortunately, yes."
Him: "Is that why your face is so round?"

I have several issues with this.
1. Why would you think it's OK to ask a girl why her face is 'so round'?
2. Why would you think it's OK to ask someone on steroids why their face is 'so round'?
3. Why would you think it's OK to ask ANYONE why their face is 'so round'?
4. IT WASN'T EVEN MY BLOODY APPOINTMENT.

But, seeing as he so kindly brought it up, now seems like as good a time as any to talk a little bit about steroids. I've mentioned them several times before, but never really gone into great detail about them. I have a bit of a love-hate relationship with steroids. I love them because they reduce inflammation, ease pain, and essentially help me to function in every day life. I hate them because...well, I believe this stunning diagram found in many a medical text book summarises it better than I ever could:

The steroid I take is called Prednisolone, which suppresses the immune system and in doing so reduces inflammation. If you take Prednisolone for long periods of time like I have you become particularly prone to infections because your immune system is weak. These infections may also be much more severe than they usually would be, so I have to be careful to avoid exposure to infections such as chicken pox and measles. I am also eligible for the seasonal flu jab along with the elderly.

As you can see from the incredibly attractive diagram above, the side effects don't end there. In fact, the NHS website lists 77 potential side effects of Prednisolone in total. Mood swings and changes are common, which means one minute I can be happy and the next sad, and I can be extremely short-tempered. My boyfriend would argue that I'm pretty short-tempered anyway, however I'm willing to blame this entirely on my medication and not on my flawed personality. He won't argue with this because I'm short-tempered due to my medication.

Although I wouldn't go as far as saying I have an 'obesity' problem as the diagram suggests, I currently weigh more than I did when I was pregnant. I WAS CARRYING AN EXTRA PERSON FOR CRYING OUT LOUD and yet still not as heavy as I am now. This is in part due to water retention and partly because steroids also increase your appetite, so I am always hungry. Prednisolone also tends to cause your face to begin to resemble the moon or, to give it the medical term, 'moon facies'. So in answer to your question Dr Insensitive, yes that is why my face is 'so round' and I'd like to take this opportunity to thank you for making me feel even more self-conscious about it than I already do.

As we learnt a couple years ago long term steroid use has also left me with osteoporosis, which means my bones are thinner than they should be and are more prone to fractures. I'm also currently covered in bruises, and I have two tiny cuts on my leg that have taken over a month to heal.

That all said, Prednisolone is doing a great job at keeping me going at the moment until the time comes to start the new wonder drug. I have already had the mandatory chest x-ray and blood tests, so now it's just a case of waiting for the call. In the meantime I'm off to find some doughnuts.

2013: A review

As I logged on to write my annual review of the last year of my life I actually let out a little gasp as I realised my last post was written back in August 2013. I knew I'd been away for a while, I just hadn't realised quite how long that while was. As well as taking maternity leave from my job I also decided to take maternity leave from my blog. It's just a shame that I can't take maternity leave from arthritis, too, but I'll save that whinge for another time. 

Before I remind you (and myself) about the highlights of my twelfth year of living with arthritis, I thought I'd share my New Year's resolutions with you all:

1. Lose baby weight. 

2. Stop eating so many doughnuts in order to stand a chance at achieving point 1. 

3. Be well enough to reduce steroid dose in order to stand a chance at achieving point 1.

3. Get better at updating blog. 

And so to the main reason for this blog post. Inevitably there have been bad times as well as good, mainly due to pain but with a few weeks of serious morning sickness thrown in for good measure. However, some amazing things have happened that mean that life right now, despite the pain, couldn't be better. 

- Getting through my last year of university.

- A much needed holiday.

- A marathon with a difference. 

- A pregnancy. 

- A new home. 

- Becoming a doctor. 

- Agreeing to marry my best friend.

- Great times with great friends. 

- Isla Rose Wade. 

- Going another year without letting this bitch of a disease defeat me. 

Happy New Year!

Dr Catherine Bull MBChB

A man went to his doctor complaining of aches and pains all over his body. 
"Doctor, my whole body hurts," he moaned. 
The doctor asked him to show him exactly where the pain was.
The man touched his shoulder - "Ouch."
The man touched his knee - "Ouch."
The man touched his nose - "Ouch."

"You've got a broken finger."

My boyfriend told me this joke a few days ago. It's relevant for two reasons:
1. My index finger currently resembles a sausage.
2. I'm now an actual doctor.

This blog post is a few weeks overdue actually, because my graduation ceremony was back in July. For once though it's not because I'm completely rubbish at finding time to blog. I've opened this page several times over the last few weeks, but it's been really difficult to put my feelings from that day into words. I have passed some of the time by searching for pictures of sausage fingers online. I didn't find any, but I did find this:

I have a sausage finger AND I graduated.

It appears that I have sunk to new lows in the name of procrastination. 

The truth is I don't think I'll ever be able to put into words how I felt that day, because there are no words in existence that would do it justice. My only solution is to describe to you my journey over the last eight years and let you imagine for yourself. I realise that this involves a bit of effort on your part, but I did just provide you with a picture of a sausage wearing a mortar board so I think it's only fair.

It's fair to say that most, if not all, people doubted whether I'd ever be able to make it as a doctor. It's not that people thought I wasn't capable but, let's face it, how many doctors do you know that have RA? Medicine is hard enough without all the pain, immobility, fatigue, and hospital stays that the disease brings. Careers advisors at college strongly advised me to consider another degree. Medical students on my course gossipped behind my back asking each other, "How is she going to be a doctor if she's got RA?" Even my parents, though they didn't admit it to me until recently and have always supported me, were horrified when I first told them I wanted to be a doctor. But, as regular readers of this blog will know, I'm not one to shy away from a challenge. And a challenge it definitely was...

May 2005 I become ill just at the time I am about to sit my AS level exams. 

August 2005 I don't get the grades I need to apply for medicine. 

October 2005 I apply anyway. I don't get in.

October 2006 I reapply for medicine and take a gap year to resit my exams. 

March 2007 I get accepted to the University of Leeds. 

April 2007 I get told by my rheumatologist that I need my hip replaced. The operation is scheduled for the first day of university. I cancel it. 

September 2007 I hobble around for a term, sleep for around 15 hours a day, don't make it to many lectures, with the end result being I fail my first exam. 

December 2007 I finally get a new hip. 

March 2008 I am allowed back to university at last, having missed most of the second term and two more exams. 

July 2008 Whilst everyone else is enjoying their summer holidays, I spend mine sitting every single first year exam in the space of one week. I pass. 

January 2009 My first of many gastritis-related hospital stays and my first of many endoscopies. 

January 2010 Another gastritis-related hospital stay. Another endoscopy. 

May 2010 The tonsillitis I have developed gets out of hand as my immune system cannot cope. I end up in hospital for a week following a collapse in A&E. 

July 2010 I fail an exam, mainly due to being ill (again) but also in part due to my poor knowledge of the female anatomy ("Considering you're a woman, Cat, you have surprisingly poor knowledge of the anatomy of the female genitalia." - Dr Pat McConnell, Anatomy Lecturer, University of Leeds). I am told I have to resit third year.

March 2011 The treatment I am on suddenly stops working, I visit my GP so many times in one week that I'm surprised they don't take out a restraining order against me. I miss several weeks of placement through illness. 

January 2012 Another hospital stay and another endoscopy means I miss my psychiatry placement and have to rearrange it for the summer holidays. 

September 2012 I am admitted to hospital after the ear infection I have developed gets out of hand because apparently my immune system doesn't do ear infections. 

November 2012 Hospital stay, endoscopy, yada yada. 

May 2013 I PASS MY EXAMS. 

July 2013 I am finally able to put two fingers up to every single person who ever told me I wouldn't be able to become a doctor and, most importantly, to RA. 

Day 198: Publicizing my private life

Since I've started this blog I've had lots of lovely messages of support and encouragement from both close friends and complete strangers alike. I've had people telling me that what I'm doing is a good thing, because before reading my blog they had no idea that young people could get arthritis or what it's like to live with it. And I've had other young sufferers of the disease getting in touch to tell me that reading my blog has given them encouragement to not let it ruin their lives, and that they no longer feel so alone in their crappy RA world. It's hearing things like that that make me feel like this is all worthwhile. However, unfortunately I also receive messages like this:

"You know what, you're not the only one with life compromising illnesses, Cat. I just choose not to publicize my private life."

Errr, sorry, you think I don't know that I'm not the only person with a shit disease? You think I don't realize that I'm not the only person with RA? You think I bore myself silly talking about my disease all the freaking time FOR FUN? Funny enough I don't actually want everyone to know I have a chronic illness, or to know me as 'that girl with arthritis'. I am doing this for a reason: to raise awareness, to get people talking about it, to get people knowing the symptoms. I can't stop someone getting RA, but if it means that even just one person gets diagnosed earlier then I'll know it's been worthwhile 'publicizing my private life.' Oh, and as if that wasn't offensive enough, said person spelt 'you're' wrong, too. 

But to everyone who doesn't think that I'm self centred and attention seeking, thank you for your continued support. Thank you for your kind messages. And most importantly thank you for reading.

Day 174: "DON'T tell me you're tired!"

I hate to do this four days before Christmas but thanks to my crippled hands I can't vent my frustration by punching walls so I am going to do it on here instead.

When I tell people I'm in pain, they generally accept it. Inevitably there are always those twats that think I'm moaning over nothing, or that I must be fine because I was fine yesterday. But in general people are very understanding about the pain aspect of my condition. However, when I tell people I'm tired it's a very different story.

When I say I'm tired, I don't just mean I feel a bit sleepy. I AM EXHAUSTED. Anyone living with RA, or any other chronic autoimmune condition for that matter, will tell you that they have a lot less energy than pretty much everyone else they know. Imagine what you feel like when you have the flu. Your body is using all its energy to fight off the virus, and all you want to do is sleep. Well that's what is happening in my body all the time...except its using all its energy to attack my joints instead.

I often have to nap in the afternoons, even at weekends when I'm not as busy as I am during the week. Sometimes I am so exhausted that I don't have the energy to walk from the sofa to the fridge to get myself a drink. I skip dinner at least twice a week because I am too exhausted to even turn the oven on or boil the kettle, let alone cook something from scratch. So I think it's fair to say that I'm a lot more than just 'a bit tired'.

I think part of the problem is that I do my best to live a 'normal' life. I love going out on nights out with my friends, and being the stubborn person I am I refuse to let my disease stop me doing the things I love. So I often go out with my friends when I should really be in bed sleeping, and therefore they think that nothing is wrong. Recently I was invited to go for a few drinks with some friends; however on this particular day I had been driving for about five hours which had used up all the energy my body had allowed me for that day and I was absolutely shattered. Not wanting to seem unsociable though I forced myself to go but I warned my friends that I probably wouldn't be my usual bubbly self  because I was tired. Sure enough I barely had the energy to even put a sentence together, but I was pleased that I had made the effort all the same...that is until a few days later one of my friends told me that he thought I'd been really boring. Somebody punch a wall on my behalf please. Or him.

A similar incident happened the other day. Almost every day after placement I come home and have a nap. It doesn't get rid of the fatigue, but it does usually give me just enough energy to function for the rest of the evening. The day of said incident was no different. At about half past nine, whilst with some friends, I opened my mouth to start to say that I needed to go to bed but was interrupted by one of them saying, "DON'T tell me you're tired, you had a nap this afternoon!" Somebody punch that wall again please.

So thanks to my shitty disease my so-called friends think I'm boring and lazy when actually I'm ILL. If my friends display such a complete lack of understanding of my disease then I've got no bloody hope in getting complete strangers i.e. the rest of the population to understand, have I. If you're one of my friends and you're reading this and you recognise one of these incidents to be you, I don't need or want an apology. I just need you, and everyone else, to try to be a bit more understanding next time I tell you I'm tired. I'm not boring and I'm not lazy - I have a chronic illness...as much as I try to act like I don't.

Rant over. I'm off for a nap now.

Love,

Cat x

Day 74: For my dad

Today is my dad's birthday. Every year he insists that he doesn't want any presents, but every year I buy him something anyway... usually a shirt or, if I feel REALLY crazy, a pair of socks. But this year I was stuck. I’m pretty sure he has enough shirts and socks to last him a lifetime and as usual I didn't get any suggestions from my dad himself. So this year I've instead chosen to write something for him and for this, daddy, I apologize; firstly for not buying you any more socks and secondly because I know, like me, you aren't good with soppy shit like this...

Ever since I was diagnosed with RA it has been mama Bull who has done most of the, well, mothering. She was the one who fed me, washed me, dressed me, and helped me go to the toilet when I was too ill to do anything for myself. She came to every one of my hospital appointments whilst I was growing up. And because of this, she understands better than anyone what I have been through, and what I am still going through. My dad, like most others, has always struggled to understand how it feels and what it is like to live with RA, whether it be why I have so little energy or why I find it so hard to unscrew a milk bottle top from time to time. And I don’t expect him to. But he has never stopped trying. There’s nothing worse than seeing your child suffer, knowing you can’t do anything to make their pain go away. Imagine having to watch your loved one cry, when you can’t even give them a hug to comfort them because it will cause them too much pain. This is the reality that my parents have had to face for the last 10 years. But they have always stayed strong. In particular my dad finds it hard to get his head around the amount of medication I have to take on a daily basis. I doubt he would even take a paracetamol if he was dying; he hates the idea of the damage the drugs could be doing to my body.

Whether he understands or not my dad has always been there for me, from carrying me up and down the stairs when I couldn’t walk to making me a drink because I don’t have the energy to walk to the fridge. And he never stops trying to understand; recently he has even started talking to me about how I feel and asking me questions about the disease. I know how hard he finds this.

So thank you, daddy, for always being there for me. Thank you for looking after me. Thank you for putting up with me being so irritable when I’m ill. And thank you for never giving up trying to understand.

Happy birthday. And I'm sorry that you are getting old.