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.