Okay that may not be a startling revelation as I have now been diagnosed with lupus since 2001 but today, in this place, right now I know that I have lupus and no amount of reframing and thinking positively is going to change this moment right now (the next moment will of course be different) and I have to admit that this is really difficult to get my head around.
As the harsh reality that ‘de nile’ is a river in Egypt (that joke is so much better when you say it) hits me it feels like being stuck in quick sand (not that I have ever been in quick sand, but I have seen the movies) where the more you wriggle the deeper you sink. I am sure that those are words from a song, hold on for a moment I’ll check (Don’t you just love the power of the internet). I was right, the words are from UB40 and Guilty. I bet you are happier now that you know that)
Where was I, oh yes, ‘de nile’ There is something so different from having mr lupus display random acts of ‘kindness’ to knowing that you are tied to him 24 hours a day 7 days a week. It’a bit like having a partner and you suddenly get to see his true colours and realise that you really don’t like them.
lupus like any other label, not just illness, has a way of defining you (if you let it of course) and becomes the lens through which you see the world. I don’t mind sharing with you how I have been feeling and a lesson that I learnt recently.
My fertile imagination had created a whole new world in my head, a world where mr lupus was king and living a rich and opulent lifestyle and I was his reluctant servant.
I could only see the things I couldn’t do. I couldn’t run, concentrate for long periods of time, walk long distances, sweep down the stairs, run the marathon etc. The last one jolted me into reality I had never wanted to run the marathon so the fact that I currently could not (and believe me I couldn’t) really shouldn’t have been a problem but there I was caught up in the web of his deceit and lies.
he was working overtime to plant serious doubts and exploit weaknesses in my mind and believe me he is good, he could win awards for his efforts.
I found that my value was linked to his antics and the harder he worked to challenge me the lower the price of shares in me became with no obvious way out of the slump.
And that is when it happened (well you know I couldn’t stay there for too long). Like a bolt of lightening (well I needed something to rise out of the slump) out of the blue I had a brain wave (great to know that that part of me was unaffected by mr lupus’ antics) all this focusing on the stuff that I couldn’t do really was getting me nowhere and quickly.
I needed to find a lifeline and at that moment, I knew exactly what I needed to do. I simply needed to focus on all the things I could do. (Interesting how lying on the settee and flicking the channels suddenly becomes a skill.) and ask for help with the things I couldn’t. Well that last part is still a work in progress but at least I am on the road and what a great opportunity to learn a new skill.