Hoping for a new blog post? Don't worry, I've got you COVID.

You'd have to have been living under a rock for the last month to not be aware of what is going on in the world at the moment. The bad news is, you're probably bored of being stuck* at home. The good news is, I've come out of blog retirement to provide you with at least 5 minutes of reading material and tell you about what this means for me.

*safe. You're safe at home.

I fall into a 'high risk' category
This is because I take certain medications (immunosuppresants) which weaken my immune system. If I become infected with the virus I am at higher risk of becoming more unwell from it than the average fit and healthy 32 (yes, I'm 32 now...) year old.

My job role has changed
I'm still an A&E doctor, but I can't see patients face-to-face at the moment, even the ones who come to hospital with a non-COVID19 related problem. There are constantly patients in the department who have confirmed or suspected COVID19, and even those that don't have symptoms right now could still be carrying it. Therefore I am currently reviewing patients with confirmed or suspected COVID19 remotely via a video consultation platform, as well as doing various administrative tasks to free up others who can still see patients. Whilst I know that this is the right thing to do, I can't help but feel a mixture of emotions about it -

I'm hugely frustrated that I'm not able to do my job - doctors, in fact all healthcare professionals for that matter, have an intrisic need to help people and not being able to do that because of something completely out of my control is incredibly difficult to accept.

I feel immense sadness that I am not able to see my colleagues - my friends - and comfort them when they are having a particularly tough day. The things we, as A&E department staff, often have to deal with means that we know how to keep spirits up (tip top bants, basically) and I really miss being part of the team.

I feel guilty for having an excuse to keep myself safe whilst my colleagues are putting themselves at risk day after day.

I'm super anxious that I'm going to get sick anyway and I will have stayed away for nothing.

People check on me a lot
Mostly my mother. But also lots of others, even some who I haven't spoken to in a long time. I guess that's the thing; when you talk openly about your medical condition everyone knows when you fall into one of the government's 'at risk' groups!

I have free time
Well, approximately 4 minutes of it between 'homeschooling' my children (iPads count as homeschooling, right?), tidying the house 17 times per day and going to work. Which luckily for you means that not only have I had time to make myself feel guilty for neglecting this blog for so long, I have also found time to write it.

When I turn my back on my kids for 5 seconds...

I will have to put up with pain for longer
I've been having problems with my shoulder for 3 and a half years now; for a long time it was assumed that it was 'just' a frozen shoulder, but no steroid injections, medication changes or physiotherapy made any difference. A couple of months ago I finally had an MRI and I'm sure you don't have to be a doctor to recognize that 'erosive arthropathy of the glenohumeral joint with complete loss of articular cartilage' does not sound like good news...

Normal shoulder x-ray

My shoulder x-ray

No one wants to have their shoulder replaced at 32.
Also, no one wants you to have your shoulder replaced at 32.
It's major surgery, a replacement joint only lasts 10-15 years and younger patients have a higher likelihood of early failure and the need for further, more complex revision surgery. Recovery can take up to 3 months and in the short term I won't be allowed to lift anything heavier than a pen. I'll be reliant on others to do absolutely everything for me (although I'm practicing wiping my bum with my right hand so don't worry, I won't be asking you for help with that) and I'll be hugely restricted in what I can wear for a while (my surgeon suggested ponchos...if that's not the biggest travesty of this whole saga then I don't know what is).

Obviously I do have a choice as to whether to go ahead or not...except I don't, really. My quality of life has gone downhill significantly - I don't sleep well due to pain, I struggle to lift anything heavier than a kettle (a concept which my children fail to understand), and even brushing my hair can be difficult. I have reduced sensation down one side of my arm and hand due to nerve impingement and my grip strength is reduced because some of my muscles are torn, meaning I drop things frequently.

So it was an easy decision, really. That didn't stop me crying like a baby though because a) I cry a lot (even once during an episode of  'Homes Under the Hammer') and b) it's not fair that I have to make decisions like this at 32 years old.

Anyway, I received this news 3 days before lockdown so, thanks to this stupid virus, I have to wait indefinitely to have the operation. When that day comes I will no doubt have a lot to blog about and a lot of time to do it in. And don't worry, even if I can't hold my phone, I can always do a vlog whilst wearing a poncho.

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. 

Six months of news

Yes, I'm still here. I know, it's been a while. For some reason, I was actually given work to do. At university. What IS that? What have six years of medicine taught me? That I should have chosen a normal degree.

Right. It's really hard to know where to start when you haven't written a blog post for SIX WHOLE MONTHS. If I had had the chance to tell you about what's been happening in my life I would have probably told you about the time I went to see Girls Aloud at the O2 in London with my friend, Sophie, and her mum, Tricia, and how my arms ached for days afterwards from all the clapping and arm waving, and how they left out one of my favourite songs, probably because Sarah Harding would have sounded a bit like this:  

I would have also probably told you about the amazing holiday my boyfriend and I recently went on, and how my hip set off the metal detectors at Gatwick Airport, and how the security officer oh so originally questioned whether I was too young to have had a hip replaced, and how it didn't set off the metal detectors at Chania Airport and I obviously therefore assumed we were going to die.

I would have also blogged around the time of year when I'm usually panicking, realizing I've got a marathon to run in a couple of months, and at least starting to consider putting on a pair of trainers. You would have heard that this year, however, was different and that I spent most of my evenings sat on the sofa, eating family-sized portions of banoffee pie out of the packet, with no intention of even getting up to find my trainers let alone putting them on. Once I even found myself watching Eastenders WEARING THE SAME CARDIGAN AS JEAN. I really need to start running again. 

When I first realized I wouldn't be able to run the London Marathon this year I was gutted. Regular readers of this blog will know how much the London Marathon means to me, and the thought that I wouldn't be a part of it this year was even more painful than the run itself. But instead I got to be part of it in a different way - as a spectator cheering the thousands of incredible people running for important causes, including two very special people running on behalf of myself and Arthritis Research UK. 

I've always found running the London Marathon to be emotional, but this year brought a whole new meaning to the word as I proudly cheered on my boyfriend, James, and one of my best friends, Alex, along the 26 mile course. Oh and by the way, they also happened to raise over £3000 between them for arthritis research in the process. 

...What else? At some point I probably would have felt the need to update you on my health. Part of the reason I haven't updated my blog in so long is because there hasn't really been a lot to talk about. This is a good thing for two reasons; one, because you haven't had to lose ten minutes of your life every couple of weeks reading about arthritis and two, because it basically means I haven't had much pain to grumble about. As a result I've even been able to stop taking medication for a while. 

And I would have at some point told you that I'm up the duff. I really hope you didn't just have to go and look that phrase up on Urban Dictionary like my friend Diviya. 

On that awful day in 2002 when I was diagnosed the freedom to have a baby whenever I so wish was taken away from me, possibly even forever. Some of the medications used to treat the disease are toxic to an unborn child, whilst the effects on a foetus of others are currently unknown. So I was told that if I ever want to get pregnant I would have to be medication free for at least six months before even trying to conceive. And then not take any medication whilst I am pregnant. And then still not take any medication whilst I am breastfeeding. Oh and somehow stay pain free so that I can actually function and, most importantly, hold my baby. For several years this simply has never been an option, because I have been too ill to stop taking medication for six days let alone six months. So when the chance arose I jumped at it...and I couldn't be happier.

Finally I would have told you about a great blog I have found written by someone else with arthritis who isn't 40 years older than me and who actually makes me laugh as opposed to making me want to eat my body weight in banoffee pie like so many other arthritis blogs do. I think you should read it.

http://arthritisactually.wordpress.com/

See?

You didn't really miss much.

And I've now finished what will hopefully turn out to be my last ever exams, so yay, we all win. 

But you drink so much milk!

Things that happen when your flatmate leaves you on your own on a Saturday night:

- You sing the theme tune to The Big Bang Theory, out loud, to yourself, including "WE BUILT THE PYRAMIDS" in an overly enthusiastic voice. 

- You download Taylor Swift's latest 'hit'.

- You sing along to YouTube videos of Les Miserables. On repeat. 

- You vote for Rylan.

- You update your blog.

Guess what I've been up to again recently. I'll give you a clue:

Yep, as you can see my 'hospital free year' has not exactly gone to plan so far. For the second time in six weeks I've found myself on a hospital trolley in A&E, although this time in a hospital back home in Surrey so at least I'm doing the decent thing and sharing out my problems between trusts. You're welcome, National Health Service. 

With my ear infection slash compressed facial nerve slash asymmetrical brain issues well and truly behind me my attention was now turned to a pain in my stomach. To illustrate just how much pain I was in, allow me to present exhibit A:

Exhibit A

These are the burn marks on my back from a hot water bottle. This hot water bottle had to be so hot to make the slightest bit of difference to my pain that it BURNED me and yet this was still the preferred option to putting up with the pain without it. 

To cut a long six day story (involving numerous syringes of morphine, a lack of underwear, yet another camera down the throat and a crazy lady called Elizabeth) short, it turns out the entire lining of my stomach was inflamed in the worst case of gastritis I have suffered to date. "BUT YOU DRINK SO MUCH MILK", I hear you cry (OK I don't, but if you saw how much milk I drink in a day things would be different). Although the anti-inflammatory drugs I take do wonders for my RA pain they can, rather inconveniently, cause damage to other parts of my body in the process. In this case it's my stomach that has fallen victim again.  Anyway I'm now out of hospital and on the mend and getting myself as fit as possible before RA has yet another go at inconveniencing my life. 

Oh and by the way, just in case you ever find yourself home alone on a Saturday night in the future I highly recommend singing along to this.

I'm still standing (literally)

Exactly 10 years ago today my life changed forever. On 2nd August 2002 I was officially diagnosed with rheumatoid factor positive polyarticular juvenile idiopathic arthritis.

This morning the boyfriend wished me a happy 10 year anniversary before he left for work. I realise you may find it strange for someone to use the word 'happy', or to even acknowledge it let alone celebrate the occasion as I plan to do this weekend. After all, what could possibly be happy about 10 years of pain? And you'd be right, there have been more tough times over the last decade than I can count on my crippled fingers and toes. At 14 years old I was being fed, washed, and dressed by my mum, carried by my dad, and was so unwell that I dropped down to just six and a half stone. If someone had told me back then that in 10 years time I would be able to walk and have the majority of my independence back, let alone being just nine months away from becoming a doctor, having run four marathons and climbed Mount Kilimanjaro, with a boyfriend who isn't freaked out by my condition, and having just carried the Olympic flame, well...I wouldn't have believed them that's for sure.

I may still have a life long battle with this disease to contend with, but in the last 10 years I have come a long way, and THAT'S what I'm celebrating.

THIS HAPPENED.

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 84: No big deal...?

I was hoping to have something perky to talk about as I have realised that my last few blogs have been a bit depressing to say the least. But then I also realised, this is kind of the point of me doing this; to educate people what it is like to be me, a sufferer of RA, right now. So if something good happens then I will talk about that. But if there’s something to rant or moan about then I’ll bloody well do that too. And today is no exception. Wait for it...

I HAVE A COLD.

“...And?” I hear you say. Because having a cold is no big deal, is it?

Well usually I’d agree. But when you have RA it’s a bit of a different story. The problems with having a virus when you have RA are twofold; 1) because some of the medication I take dampens down my immune system, my immune system is not equipped to deal with said virus, so I come off worse than your average Joe and am stuck with it for what seems like forever, and 2) my feeble immune system does at least attempt to fight off said virus but in the process decides to attack my joints as well.

So when you have RA having a cold is pretty bad news. And I can’t afford to be ill at the moment – I have just started an obstetrics and gynaecology placement as part of my doctor training and being sick just isn’t part of the timetable. So in my attempts to deal with this somewhat shitty situation I have been going to bed at about 9PM for the past three nights. But then because of the extra pain in my neck and back (and standard crippled hand pain, obviously) I keep waking up at ridiculous o’clock in the morning. So on top of being ill and in pain I’m also exhausted. All because of a stupid cold. 

It’s a shame because I am loving my placement at the moment. There aren’t many people who can say they spent their day feeling babies kick, listening to their heartbeats and watching them on an ultrasound scan, and I feel very lucky that my treatment has got me to a point where I am well enough to train and do all these things. I did get some funny looks when I checked some mums’ blood pressures today, though; it’s probably not the most reassuring thing when the person checking your blood pressure is wincing with every squeeze as she inflates the blood pressure cuff... (my hand wasn’t impressed with being made to do that and despite all the practice it’s had my face didn’t manage to hide the pain on this occasion).

Anyway it’s nearly 9PM which means it’s nearly time for bed. Ugh, I can’t believe I am saying that at the age of 23.

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. 

Day 64: 80-year-old bones

Today I was scanned by one of these:

DEXA scanner

With a stylish hospital gown on and my legs propped extremely elegantly I had my lower spine and right hip scanned to monitor my bone density. Four years ago this same machine diagnosed me with osteoporosis and I was told that I had 80-year-old bones. This wasn't exactly the greatest news I've ever received, but personally I think it’s a small price to pay for my mobility. Another part of my daily drug regime is Prednisolone, a steroid. It helps to reduce the swelling around my joints and generally makes me feel that little bit less ill. Mama Bull tells me that it was the Prednisolone that enabled me to be able to walk again back in the day when I was first diagnosed, so it’s a pretty great drug as far as drugs go. But it also has some pretty shit side effects, including thinning my bones and making them more prone to fractures. Aside from having to take a couple extra pills a day, losing me half an inch in height, and having to go through this scan once every two years though I’m pleased to say it hasn't so far had much effect on my life. For now I have to wait just over a month to find out from my rheumatologist whether or not my bones have got any worse. 

Day 62: You've been through a lot, haven't you?

Today I had to visit my GP for a review of my medication. It was never exactly going to be the highlight of my day anyway, but the thought of it was made much, much worse by the fact that my usual GP was away on holiday. Great. If past experience was anything to go by I was going to be stuck with some moron who doesn't know me and knows next to nothing about my condition. I couldn't have been more wrong.

Within 20 seconds of being in the room she said something that only one other person has ever said to me in the last 10 years: “You’ve been through a lot, haven’t you?” It was like a huge weight had been lifted from me. Don’t get me wrong, the last thing I want is pity and I don’t spend my life feeling sorry for myself; on the contrary I actually consider myself to be lucky. I’m not dying, I’ve responded better to medication than others in my position and I’ve been able to do things that many others with the condition can only dream of. But it was such a relief for someone to acknowledge that actually, yes, my life is a challenge, it’s not the nicest thing in the world to have to cope with pain every day, and it’s not the best feeling in the world knowing that I have to deal with this for the rest of my life. And with that, my faith in my GP surgery was restored. It’s a shame the same can’t be said for my rheumatologists.

Up until March I had always been under the care of a fantastic consultant in Surrey who had got to know me, knew what was important to me, and whom I saw each time I attended clinic. I couldn’t have asked for better. Now I am under the care of a consultant in Leeds, who I’m sure is brilliant, but I’ve never actually met him. In fact, I'm not even sure if it's a 'him'. Instead every time I attend clinic I see a different registrar. Don’t get me wrong, they are very good at their job and I am very lucky to be receiving care from the centre of rheumatology in the country, but they don’t know me and they don’t know what’s important to me. It’s incredibly frustrating having to explain the last 10 years over and over again to someone different every time. It’s also incredibly frustrating when they tell me to stop taking a drug that I have been taking every day since I was 14. This anti-inflammatory drug, Diclofenac, reduces some of the swelling around my joints, and so helps with the pain. I swear by this stuff – if I ever forget to take it then man do I know about it. Unfortunately, as with pretty much every other drug I have to take, it comes with some down sides. This particular one causes erosion of my stomach lining, and I have actually been hospitalised three times because of it. Fortunately my stomach hasn't perforated so far, but this is a risk that comes with taking the drug. So yes, OK, I can see their point of view. I could really do without a hole in my stomach right now. But I could also do without being bedridden. Without meaning to sound dramatic, if I had to choose between knowing I won’t be able to live a normal life, or risking dying from a potential hole in my stomach, I’d choose the latter every time. After all, what’s the point in living if I can’t live? And this is something that my old consultant completely understood, and he respected my decision. My new registrars have taken no notice of my feelings whatsoever though, and have written to my GP to say under no circumstances am I to be prescribed Diclofenac anymore. So much for treating the person and not just the disease.

On the plus side I had my blood pressure checked today and, in the words of my lovely GP, it 'couldn't be more perfect'. So at least there's one thing that hasn't gone wrong with my body yet. AND, exactly one year ago today I reached the summit of Mount Kilimanjaro. Rheumatologists take note – I wouldn’t have been able to do that without Diclofenac now, would I?

Day 55: On top of the world

Exactly one year ago today I was setting off on my latest challenge: to climb Mount Kilimanjaro, the highest freestanding mountain in the world. It seemed like a good idea at the time, after all what better way could there be of putting two fingers up to arthritis?

It turned out to be both the best and worst thing I've ever done in my life.

It was a big enough challenge just getting to Tanzania in the first place, and I'm not talking about the eight hour bus journey from Nairobi on the somewhat questionable roads. The first problem was my knee; it never really recovered after I put it through 26.2 miles back in April for the London Marathon, but I've never let a little bit of pain stop me before and I didn't intend to let it this time either, despite mama Bull's efforts to persuade me otherwise. The second problem was that I wasn't allowed the live yellow fever vaccination. Some of the medication I take works by suppressing my overactive immune system, which essentially means my body is too shit to fight off infections. In other words, injecting me with the yellow fever vaccination would actually result in me getting yellow fever, which I could really do without if I'm honest. It turns out that the yellow fever jab is fairly vital for travelling to Tanzania (once again there was a hopeful look in mama Bull's eyes that I would have to stay in England). However several calls to the Tanzanian Embassy later I was assured that I would definitely be allowed in the country. Phew. That just left the small matter of climbing a fairly big mountain...

It was the hardest thing I've ever done in my life. Suddenly running a marathon seemed easy in comparison. Although my joints held out, my knee suffered for a long time afterwards, and my lack of energy made the early starts and long days of walking even more of a challenge than it already was. But I did it. Take that RA, you can't stop me doing anything.

On top of the world... literally.

I listened to a lot of music over the six days of climbing, but there is one song in particular that reminds me of the very emotional moment when I reached the summit. Hearing this song reminds me that I have the strength to beat this bitch of a disease.

So today, one year on, I'm not ashamed to admit I'm feeling a little bit emotional. A lot has changed in a year. My body is failing me once again, but hopefully with a bit of help from the joint juice in the not so distant future I'll be ready to take on the next challenge... sorry in advance mama Bull.

Day 42: D-Day

Today is day 42 which, as maths fans will know, means it is exactly six weeks since my first joint juice infusion. Six weeks is supposed to be D-Day – that magic date when, if it was going to work, I should have started to feel an improvement. I have definitely not felt an improvement. If I was awaiting a mail order dress I would have rung up to complain about my lack of post by now, or demanded my money back. I have just googled Rituximab in the hope of reassurance, and have found a guide that says ‘it is usually clear by three months whether Rituximab will help you’. Bloody brilliant, would have been nice if someone could have told me that before. So now I've potentially got until 28^th September to wait until I know whether or not this really is my miracle drug. Oh well, at least I don’t have to lose hope just yet. Until then put the date in your diaries, folks, and cross your fingers for me.

Day 41: Anything for chips

Today was a big day – I attempted to ride a bike for the first time in over nine years. I used to ride a lot when I was younger, but when the RA reared its ugly head I became too ill to even get onto a bicycle, let alone ride one. As the years passed I lost my confidence and therefore became reluctant to even attempt to do it. But today my family decided to go on a bike ride to a pub and, not wanting to miss out on the free chips, I decided now was the time to have a go.

I look a lot more confident than I feel at this moment.

And as you can see in this video, I did it! Mama Bull was proud; my dad was too busy building a wall to notice.

What you don’t see in this video is that, as it turns out, I can’t stop. The brakes are on the left side of the bike and my fingers are so crippled on this hand at the moment that I can’t actually use them. Didn’t really think that one through.

I didn’t let that stop me getting to the pub though and 1.5 miles later I arrived all in one piece (well, in as much of a piece as I was before). It’s not quite John O’Groats to Lands End, but at least it’s one step closer to the dream of completing that challenge.

Outside the pub. 

In other news on Wednesday I went to London for a BRIT meeting. BRIT (British Inspiration Trust) is an awesome charity founded by an awesome man and I feel very privileged and proud to be a part of it. So much so that I’m going to tell you all about it.

BRIT was founded by Phil Packer MBE, an ex-army Major who suffered spinal cord damage during an explosion in Iraq with the initial prognosis that it was highly unlikely he would ever walk again. Three years on he has rowed the Channel, climbed the 3 Peaks in 72 hours, walked the London Marathon in 14 days and climbed El Capitan. It was during his second London Marathon effort in 2010 that I met Phil, when he walked the 26 miles in 26 hours for 26 charities, walking each mile with a young person from each of the charities.

Phil is one of the most inspirational people I know. When I first met him I was going through a difficult time, but he showed me that having a disability does not have to stop you achieving your goals. BRIT was launched in January this year to build a Centre of Inspiration for charities and for young people facing adversity. With the combined support of inspirational figures from every sector of society (Richard Branson, Ben Fogle, Jamie Oliver to name but a few). BRIT aims to deliver inspiration to young people facing adversity to overcome life’s challenges during their darkest times in order to provide hope, aspiring choices and assist them in regaining their self belief, self confidence, and self worth.

As a member of BRIT’s Young Persons Visionary Steering Group (YPVSG) I help to raise awareness and decide who will become guiding mentors. Essentially I am representing every young person in the UK with a form of arthritis – a huge responsibility but equally something that I am extremely honoured to do. Through BRIT and the YPVSG I have met so many inspirational people that I am lucky enough to now call my friends. They really help to put my life into perspective – if they can overcome life’s challenges then so can I.

The other thing I should probably update you on is my health... Tuesday will be exactly six weeks since my first joint juice infusion and, at the risk of sounding like a broken record, I definitely do not feel any better so far. In fact, I’m worse. For the last 10 days or so I’ve had to nap every single afternoon (no wonder people associate this disease with the elderly) and I’ve been getting next to no sleep because the pain in my hand has got so bad it is waking me up every night. For the last two nights I have given in and taken Tramadol (a mega strong pain killer that has a habit of giving me hallucinations and spacing me out) just to get me a couple of extra hours of shut eye. As you know this did not stop me riding a bike though, nor did it stop me going to Southampton yesterday to watch my beloved Saints beat Leeds 3-1 in the first match of the season. The only bad thing about the score was that it meant I punched the air three times, which my arm did not appreciate. Totally worth the pain though.

Day 30: Do not ride if you have back or neck problems

For reasons I won't go into now I am back in the UK.

Yesterday I spent an amazing day with my cousins at Alton Towers. As ever I chose to ignore the numerous 'avoid if you have back or neck problems' warning signs before almost every ride, and I even managed to win at Duel (the lazerquest ride) with my crippled finger. Who says having arthritis has to ruin your fun?!

Day 16: What have you done to your hand?

Hola!

I haven't posted in a while, partly because there hasn't been much to report and partly because it has taken me four days to work out how to translate this site from Spanish to English. I am in Sotogrande on the south coast of Spain (20 mins from Gibraltar, 45 mins from Marbella) working as an au pair for an English family. The kids are fantastic: the 2-year-old has already told me he loves me and the 5-year-old has said he wants to marry me... if only men would fall at my feet this easily. However they would knacker any healthy person out, let alone someone like me with RA. But, as always, I am looking at this as a challenge and not something I can't do. 

I am still waking up with ridiculously painful hands and finger, so clearly the joint juice hasn't worked it's magic yet. For the first time in a while I am having to admit to myself that there are certain things I just can't do at the moment, such as the monkey bars at the water park today or doing a hand stand in the water for more than five seconds. Trivial things to most of you I'm sure but for me to have to say I can't do something is unbelievably frustrating, especially to an 8-year-old who doesn't understand what arthritis is (though naturally I have done my best to explain it to her - brainwash them from a young age and all that).

The parents - my employers - are aware that I have RA. Yet this morning when I came into the kitchen wearing a wrist splint the kids' dad still asked, "Oooh, what have you done to your hand?" Because obviously since I saw him last night I've had a chance to injure myself, seek treatment, and get hold of a splint. I realise this naivety isn't his fault though, people just don't understand what RA is. It's things like this that make me even more determined to help educate the world about arthritis.