There are worse things than dying...

I never used to think that. Dying was the ultimate. Dying was THE worst thing I could imagine could happen to someone. Until I got sick. Very sick. And then I never got better...

8 years ago I looked, felt, moved, dressed, ate, saw, walked, laughed, lived very differently to how I am today. I was successful. I had a fiance. I had a career. I was earning great money. I was feeling quite happy with my life and where it was going. It's ironic when they say "the world is at your feet" because its one of the worst affected parts of my joints now. Everything you are, everything you know and everyone you know changes when you get diagnosed with a chronic illness, an autoimmune illness, several autoimmune illnesses and RA.

Suddenly I was faced with acronyms flying at me like RA, ESR, CRP, ANA, MTX, MRI, DMARDs, you name it. And it never stops. One drug after another, one test after another, one flare after painful flare. Hands that shake, numb, burn, hot, red and OH the pain... the never ending, up at dawn, nonstop, 24 / 7, pride swallowing pain. Pain that sometimes makes me want to cut off my limbs; and that is one of my autoimmune illnesses. I dont recognise myself these days physically but I look for myself inside all the time. I talk to that part of me that still lives deep down and under attack by my own immune system. I talk to her in my mind and I see myself as sharing my life with as with my evil autoimmune alter ego. A constant battle with victories and terrible losses.
I have managed all of this with some tools of survival such as, humanity, self love, forgiveness, acceptance, hope, my husband, my friendships, my fur companions, my sense of humour and my self respect and compassion...

I sat in my doctors office in tears of pain, blind in one eye, tremors in my arm and leg, exhausted and numb in my fingers, face and toes, joints screaming. I looked at her and said "there are worse things than dying. They are suffering and lack of understanding."

I do my best to make sure that the people that really matter will understand as much as they can so that no one has to suffer more than they already do. So I blog and I hope. Everyday. Maybe one day we won't have to suffer pain or have lack of understanding.

Gentle hugs,

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