Day 182: Happy New Year

To say 2011 has been a bit of a roller-coaster would probably be the biggest understatement since someone said that RA hurts.

2011 has been the year in which yet another treatment has failed leaving me barely able to walk, with irreversibly damaged hands and, at one point, in the A&E department of Leeds General Infirmary sobbing my heart out and begging for someone to help me - yep, RA strips you of your dignity as well as your independence and nope, nobody could do anything  to help. However 2011 has also been the year which saw me celebrate my 24th birthday pain free for the first time in over nine years thanks to my shiny new treatment. 

I shall leave you, and 2011, with a quick run down of the highlights:

- Yet another treatment failed. And I'm pretty sure I broke some sort of record with 4 GP, 1 out of hours, and 1 A&E visit in the space of a week. 

- Despite not being able to walk six weeks earlier, I completed London Marathon number three (with a little help from my brother and a swig of cider at mile 16). 

- I passed my exams. 

- I started new treatment.

- I saw Take That live.

- I rode a bike for the first time in nine years. 

- I started an amazing new job.

- I got a tattoo: the co-ordinates of the summit of Mount Kilimanjaro - my biggest achievement to date - on my damaged wrist. It reminds me of what I can achieve despite the pain.

- I went to Wigan to learn about hips. And to talk about mine. 

- I celebrated my 24th birthday pain free. 

- I said 'shit' in front of some posh peeps... and talked about joints (of course) at the ARUK 75th anniversary Lantern Opera. 

- I started bone treatment. 

- I talked some more about joints at the ARUK All Staff Day in Loughborough. 

- I talked about joints some more. 

- And last but not least, I went another whole year without letting my bitch of a disease defeat me. 

...I have a pretty good feeling about 2012. 

Happy New Year! 

Love,

Cat x

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 167: Hip hip hooray

Today my hip is four years old. Can I get a "hip hip, hooray"?!

Yep, this time four years ago I was on the operating table, and at this point the registrar discovered what he later went on to describe to me as 'one of the worst hips he has ever seen'. Well, I've never been one to do things by half. To be honest, the competitor in me was a little disappointed that it wasn't the worst he'd ever seen.

My ceramic hip looks something like this.

I've said it before and I'll say it again: I am one bloody lucky girl to have had this surgery. Had it not been for the operation not only would I be in a world of pain right now but I would have inevitably ended up wheelchair bound and would not have achieved any of the things I've managed to achieve in the last four years. 

Before I arrived on the ward the day before my surgery, the staff on the ward genuinely thought there had been a typo on their patient list - i.e. that my date of birth was actually 1937 and not 1987... because no 20 year old could possibly be needing a hip replacement, right? I am actually rolling my eyes as I write this. If nursing staff don't realise that young people can get rheumatoid arthritis then it's no bloody wonder that the rest of the population don't realise it either. 

During my stay in hospital I made friends with two ladies named Vivian and Joan. I think their names give you a hint as to their age bracket but, age aside, we all bonded over our hip replacements and passing each other in the night with our zimmer frames on the way to and from the toilet. Joan in particular provided me with a lot of entertainment whilst I was on the ward... possibly not always intentionally:

Vivian: "I've had what you've had." (meaning a hip replacement, obviously)

Joan: "Constipation?"

With four years up now I have found myself starting to play a bit of a waiting game. For the average person who has a ceramic hip replacement like mine it is expected to last up to 10 years before it needs replacing again. However the average person who has a ceramic hip replacement is about 70, not 20 like I was. They're not as active as someone in their 20s, they're not training to be a doctor, and they almost certainly aren't running marathons or climbing mountains. So noone can really predict how long it's going to be before it will need replacing again. Maybe I'll be lucky and it'll last a whole 10 years, or maybe I'll need it done again next year. Either way, I'm extremely lucky that whenever the time comes, the surgery will be there to change my life all over again.

One more time now, HIP HIP, HOORAY.

Love,

Cat x

Day 166: Pass me the saw

I got no sleep last night, and not in the good way. 

My hand chose last night to flare up in a big way - it is now very swollen and very painful. If this isn't proof of the unpredictable nature of the disease then I don't know what is. When I went to bed at 10PM last night my hand was fine. Two and a half hours later I woke up with a throbbing wrist. At 5AM I even found myself crying, partly through frustration at not being able to sleep and partly because the pain really was just that bad. If someone had offered me a saw there and then I would have genuinely considered chopping my hand off. 

I say the pain was just that bad, but actually it's still just as bad now - hence why I find myself writing this instead of being sat in an ENT clinic right now. It's my left hand that's flared up, so obviously I'm left handed - RA never seems to want to make life easy for me. This means I couldn't even get dressed this morning or do my hair, let alone drive to the hospital for placement. So I'm currently laid up in bed waiting and hoping for the pain killers and anti-inflammatory drugs to kick in so that I can make it to an Eneuresis clinic this afternoon. In the meantime if anyone has a saw I can borrow you know where I am... stuck in bloody bed, that's where.

Love,

Cat x

Day 165: What are you doing on 10th December 2012?

I genuinely got asked this today. 

I thought this was a joke at first, so I did my over-exaggerated fake-yet-very-convincing laugh, but nope, he was being serious. So I now already know what I'm doing on 10th December 2012 - I'm having my next bone juice treatment. It's a good job I'm a stationery whore and I bought my 2012 diary over a month ago. 

So this afternoon I had my first bone juice infusion. I have finally learnt how to say its actual real life name off by heart - it's called Zolendranic Acid. Personally I think 'bone juice' sounds a lot friendlier. So basically what happens is, they use a needle to stick a plastic tube called a cannula in a vein in my arm and then attach it to a drip filled with the Zolen...bone juice. And then I wait for it to make its way into my body. 

It's a good job I had my flatmate Alice with me because it's a pretty boring process. 

I also know what I'm doing on 4th and 18th January 2012 - having my second cycle of joint juice. Ok, it didn't last as long as I'd have liked, but all in all I think it's fair to say that round one was a pretty big success, and with my arm flare still in full swing round two couldn't come soon enough. 

Last week I was invited to speak at the ARUK All Staff Day in Loughborough. First Wigan, now Loughborough...such is the jet set life of an arthritis warrior. ARUK has teamed up with Great Ormond Street Hospital to set up an adolescent research project over the next five years focusing on adolescents with arthritis, and I am honoured to have been asked to chair a committee who will help to determine the issues vital to teenagers with various forms of the disease. Being a 'normal' teenager is hard enough. Being a  teenager with arthritis is a bitch. So I spent the morning telling the staff at ARUK my story and explaining why. And I'm going to keep telling my story until every single person in the country is RA educated.

Love,

Cat x

Day 157: RFA

Things I am SO over: feeling shit, blood tests, steroid injections in my bum, RFA.

(I am sure you can probably work out what the ‘F’ stands for. I’ll give you a clue, it’s not fabulous.)

This week I was lucky enough to have a rare morning off from the hospital. So I spent it... back at the hospital. My clinic appointments seem to come round way too quickly at the moment. But this one couldn’t have come a minute too soon as over the weekend my painful shoulder turned into a full blown arm flare, which also meant I was feeling like shit. When you have RFA a rheumatology clinic waiting room is probably one of the most depressing places in the world – everywhere I look are reminders of what I was like, what I am like, and what I might end up like in the future. As if I don’t have enough constant reminders of my disease on a daily basis already. Since the pain was in several different joints there was no point in injecting them individually so instead I was given a nice big injection of steroid into my bum. It hurt. A lot. But I’m already feeling the effects so it was definitely worth it, even if I did spend the rest of the day walking like a total spaz.

On a day to day basis I am pretty damn good at coping with my condition, and living with the reality that I will have to deal with this for the rest of my life. I try not to think about the future, as if I did it would be hard not to feel depressed. However hospital appointments tend to make this harder to do. Every time I realise how fed up I am of blood tests, injections, xrays, swollen joint counts, examinations... in fact I realise how fed up I am of RFA. And I realise that this will continue for the rest of my life.

Jeez, I have just re-read this - maybe I should consider changing my name to Moaning Myrtle. It's ok though, I headed straight to the bakery and bought myself some doughnuts and promptly manned up and stopped feeling sorry for myself, so you can put those pity eyes away. 

Love,

Cat x