#NINE. WORLD LUPUS DAY. 10TH MAY.
It’s another uncharacteristically emotional post for me today but on WORLD LUPUS DAY I can’t ignore it and pretend it hasn’t been the biggest challenge of my adult life. My story is in my blog (posts #ONE and #FIVE) I won’t bore you with it again now. But I do want to just say a few things about the illness that changed my life overnight in 2009.
Lupus has robbed me of so many things; finishing my law degree and pursuing a career, being able to enjoy pregnancy, being awake to experience the birth of my two children. Missing family holidays, holidays with friends, family funerals, family weddings, friend’s weddings, gigs, sporting events and comedy shows I’ve bought countless tickets for and had to miss. It’s taken away all the sports I loved to play and time with my family and friends, it’s stopped my brothers and my parents from taking certain holidays and doing things for themselves when I was at my worst. The guilt I felt was overwhelming and consuming. Lupus stripped me of my self-confidence and slowly of my self-worth. Ten years of surgeries all over my body, the scars; both mental and physical, genuine fears that I wouldn’t survive the next bout of sepsis. I could go on, it’s so easy to list all the negatives.
But what about the positives? What has Lupus brought to my life that wouldn’t otherwise be here? Firstly, my mind has been opened; I no longer judge anyone on their circumstances without knowing their full story. My two babies are my miracles; my specialists don’t know how I carried two babies successfully and my gosh I’m so proud of my body for that. The scars I once hated are now scars I can cherish because they gave my children life; and they gave me life. I wouldn’t be alive without a single one them. I’ve learnt how precious our health is and every day I feel well I embrace and I live. I’m not afraid to love with all of my heart because I know how quickly it can all change and be taken away. I eat the foods I love because I had seven years of being tube fed, I love my body that I once hated and I appreciate the small things. A trip to the shops, a drink with some friends, a drive and a gentle stroll somewhere; there was a day these were a million miles from my thoughts. There was a day my neurologist sat and told my parents and I that the paralysis was looking to be permanent and I would never walk again. The very fact I was able to defy that gives me the perspective I need on a bad mental day (because we all have them) to realise that this life is a blessing. There are times I wish my children didn’t have to witness me being unwell, but then I realise their compassion and their empathy and their ability to love so openly has come through this awful illness.
I wish Lupus hadn’t caused the suffering it has caused me, and so many others (approx. 5million people worldwide), but the silver linings? I wouldn’t change those for the world.
To anyone suffering with Lupus, or watching loved ones suffer; I feel your pain and I hear you. It’s tough, really f*cking tough; but you are tougher.
