So who is Arthur?

For years I didn't speak to anyone about this disease, not even close friends. I hate the fact that it affects my life in any way at all but when it's really bad, it can dominate it completely. I’ve never wanted it to define who I am so I’ve always been reluctant to talk about it. There’s also always been a certain degree of guilt for me too, feeling like people think I’m just lazy and being concerned that people think I’m an attention seeking, whinge-bag. But as I’ve got older and grown into myself as a person, learnt to love myself warts & all, I’ve come to realise that it’s not my fault that I have this disease, I don’t exaggerate how I feel or use it to my advantage in anyway. The people I have talked to about it or seen how I struggle some days don’t treat me that way so I worried unnecessarily. I think it’s partly because I’ve never felt I can be myself fully, I’ve been living within the confines of what Arthur will allow me to do since I was quite young and it’s not easy, it’s a struggle & one I fight constantly.

People tend to think of arthritis in terms of osteoarthritis - stiffness & painful swelling of the joints but the type of arthritis I have is so much more than that, it's an auto-immune disease whereby the immune system attacks the tissues around all the joints in the body, sometimes just one or two at a time, but often it can be all of them at once. I get shooting pains through my joints & if my system gets run down I get ulcers around my mouth & down my throat and feel exhausted & fluey. I have to take a high dose anti-inflammatories 3 times a day as well as painkillers, both of which have unpleasant side-effects and the simple fact that I have to constantly fill my body with drugs is quite repellent to me, I hate it. I’ve tried every natural alternative you can think of but nothing seems to make a huge amount of difference.

So how do I cope? I treat this disease like an unwanted house guest who refuses to leave, Arthur – Some days he’s a grumpy old bastard who moans about every little thing & gives me hell, other days I feel we live a bit more harmoniously & he leaves me to get on with living my life. I have windows of freedom when I feel I can do the things I want to (to an extent) and I try to maximise those opportunities to balance the days, like today, when I’m confined to the sofa, forced to rest because my body is wracked with pain & refuses to do any more.
I’m not, by nature, a lazy sit on my arse kind of girl and being forced to rest doesn’t sit well with me. I like to get out & about in the fields, the woods & hills – I’m happiest when I’m roaming around the wilderness, that’s where the world makes sense to me, it’s what keeps me sane & helps me deal with the other aspects of life which I find pointless & frustrating. And when I can’t get out there, it drives me mad! I’ve had to learn to ask for help when I need it and to rest when I need to in order to manage life with Arthur more effectively, it’s not been easy!

But you know, despite all of that, I try to focus on the fact that my situation could be a lot worse. I could be more immobile more of the time. I’ve had many visits to the Rheumatologist at the hospital & I’ve seen many people, from very young children to the more elderly, who are s much worse off than me. People who are confined to a wheelchair or have hands which are so crippled with arthritis that they are curled like claws & are relatively useless.

I’m lucky; I can still manage to do most of the things I want to most of the time. I accept that there is a price to pay – if I go for a long walk like yesterday, then I’ll be in pain & have to rest today. If I go to a gig or a party, I can still dance my pants off (albeit with the aid of painkillers) and I’ll be in agony the day after. But it’s worth it, I’d rather live my life & accept the price I have to pay, than surrender to Arthur & let him beat me.

While there’s breath in my body he won’t win. We live in constant conflict, some days he gets one over on me, he might eve win a battle now & again but he’ll never win the bloody war!!