Someone here recently wrote about a method they had found to beating lupus. It got me thinking not just because the post 'inflamed' (sorry naughty pun) a variety of reactions, but also because like it or lump it for most of us lupus is here to stay and there probably never will be a quick-fix or a magic-wand that'll make it disappear.
To those that have the motivation and will-power to change their lifestyle as a way of coming to terms with their disease; well-done. It's not an easy thing to do (I'm thinking cake, buttery toast, and bacon sandwiches) and you should feel immensely proud of yourselves. But also perhaps have the humility to accept that not everyone is at the point where they have the resources to I suppose martyr themselves to their condition. Eating well, and riding the body and home of artificial chemicals is as much a political as a health act. And this site I believe needs to be a safe place for us to discuss our dis-ease without getting too much into politics
That being said, I do know in terms of myself that I try and placate a lot of my lupus symptoms (and hopefully disease progression) through a decent diet with a moderate degree of success. However when I'm having a 'lupus' day/week//month this is far from easy. I barely have the energy to boil myself an egg- let alone deal with the seemingly monumental task (inc all the washing-up, that's the worst, the damn washing-up and mess that comes with cooking) that goes with eating well. And of course I'm not always perfect in what I do. Sometimes I just fancy a fat fry-up, followed by a chocolate bar end of. Diet plays a part, but the story of lupus is much more complex than just that.
The fear that one day I may be caught 'off-guard' and my friend lupus will decide that it fancy's a piece of my kidneys, or my lungs, or my heart is always lingering there. I'm trying to come to terms with that, and not let my mind-scape mirror the battleground of my body. This isn't always perfectly straight-forward, but I think coming to the idea that lupus isn't something I need too or even should "beat", is the only path I can go down. When my body is already minefield of renegade antibodies, using such a language of war when referring to myself and 'it' isn't particularly helpful.
A Buddhist nun once wrote of the irony of witnessing peace activists during demonstrations argueing- at times even clobbering their opponents with their rainbow banners- for peace. I think for many us this anecdote can aptly extend to the way we view see ourselves and our lupus. Any lupus beating we do in a way perpetuates the nature of the disease. On some level words such as 'fight' 'beat' and 'battle' assist us to re-enact psychologically what is happening to us physiologically.
More than radical diet changes, or even magic-cures- for us lupus-suffers the biggest challenge is that of the mind; when our bodies are a war-zone how do we stop our heads from following suit? How do we find peace with what and who we are? How do we transcend our lupus and our suffering and simply be at one with it all? And is this 'oneness' for want of a better word the destination our different lupus journeys ultimately ought to reach?
Acceptance doesn't have to be a passive thing. It isn't in any way that I bow-down subserviently to pain, fatigue, skin deformations, and organ problems. Neither does it need fancy trappings; money, special things or snake oils aren't at all necessary to find acceptance. It, I believe come from a simple moment when you crudly say to yourself this is who I am. And this I what I have to live with. OK. What next?
Sorry if this at all sounds preachy, I'm not trying to declare how anyone should be, or think , or act. I suppose in a way I'm just trying to philosophise on the common situation we find ourselves in. And to ponder what living with a long-term health condition really means.
So I ask, Is lupus something we need to beat?
(P.S. here's my lupus 'C.V' for any of those interested: aged one after months of being ill and bruising at a touch, I was diagnosed with idiopathic (immune) thromobocytopenia- my immune system was attacking my platelets- was put on corti-steroids for nearly 2 yrs. It passed. The rest of my childhood/adolescence was relatively uneventful- though I always had an acute awareness there wasn't something quite right in my body, I didn't really know how to articulate it. Fast-forward to 2 years ago; in the early summer I developed blazing red rash on my upper chest area, nose and cheeks (where my skin was exposed to sun) the niggling joints pain that had been around for years got more niggling, and some days I really struggled getting myself out of bed. As winter drew in the rash faded and i 'forgot' about it. Next summer the same happened again, this time I decided to listen and took myself to my GP. I was very fortunate, she is super-efficient and based on my history of immune problems and the fact that my maternal grandmother had lupus, she ordered a series of blood-tests and referred me to see a Dermatologist re the rash. Three months later I had a diagnosis; I had an ANA of 1:360, was ds-dna + and ro +, I started seeing a Rheumatologist who put me on 200mg Plaquenil and also began dealing with the aftermath of diagnosis... I'm lucky so far not to have any noticeable organ involvement, I still suffer badly with exhaustion though....)