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?