Day 123: The 'I' word

Last Monday I headed to ARUK HQ where I had the pleasure of meeting Jacqui, who is organising the 75th anniversary Lantern Opera. A few months ago I was honoured to be asked to speak at the event. Many of the people attending won't have any idea what it is like to live with arthritis, or even that, (surprise, surprise) yes, people under the age of 80 really can have it. And it's my very important job to educate them. No pressure then. During our conversation Jacqui used the 'I' word. It's not the first time someone's used it but I don't feel any less uncomfortable the more I hear it. The word I am referring to is 'inspirational'. I have often wondered what makes people tell me I'm inspirational. It's just not a title I feel I deserve. The way I see it, if you're unlucky enough to be hit over the head (and shoulders, and knees, and wrists, and ankles, etc) with the shit stick that is RA, you can go one of two ways. You can feel sorry for yourself and let it defeat you. This is completely understandable. It's completely shit, there's no other word for it. Faced with a future of pain, immobility, and an uncertain prognosis, I suspect most of you would go the same way. However there is also a second option, an option which I have just happened to have chosen. Yes, having arthritis sucks big time, but I refuse to let it ruin my life or stop me achieving my goals. I don't think there's anything inspirational about that. After all, I'm just living my life aren't I?!  

On Tuesday I caught up with Phil and Sally from BRIT. Now if anyone deserves the title 'inspirational' it's Phil (in fact Sally does as well for putting up with him on a daily basis). Despite being told he'd never walk again after sustaining spinal cord injuries during an explosion in Iraq Phil has rowed the Channel, climbed El Capitan, walked the London Marathon twice, and completed the 3 Peaks Challenge in 72 hours. Today he filled me in on his latest challenge which will see him raising awareness of his charity BRIT. Now I realise you must all be on the edge of your seats right now wanting to get in on the big secret, but you're just going to have to wait until January 24th 2012 to find out...

Phil and I at the start of the London Marathon 2010.

On Thursday thanks to the bitch that is RA I had to go to the dentist. 

THE DENTIST. 

Before I'm allowed to start the bone juice treatment I have to get the all clear from the dentist because of the risk of osteonecrosis of the jaw (still not sounding any less scary, is it?)  Now I can see the importance and all, but I REALLY hate the dentist. Sitting still whilst some woman pokes around in my mouth, tells me I need to brush my teeth better, and then charges me 17 quid for the pleasure isn't exactly my idea of fun. But I got the all clear to go ahead so I guess I can forgive her just this once. With that trauma over and done with I headed over to ARUK HQ again for a catch up with the lovely Riikka, Communications Officer extraordinaire. 

Oh yeah, and the arthritis thing... with such a busy week I barely had time to stop for long enough to notice that once again I am PAIN FREE. 

Love,

Cat x

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.