The decision had been made. I was to wean off steroids. Gradually. Slowly. Frustrating as this felt, I knew this was an extremely delicate situation which had to be handled carefully. The risk of a relapse, wheather that be optic neuritis (eye sight loss) or transverse myletis (paralysis), only time would tell. As desperate as I was to get off the damn things, my body would eventually have to kick in and produce its own steroid.
I was still raging hot, weight ever increasing, moon face, swollen feet and legs, and a small hump at the top of my back/neck. I felt so unattractive and uncomfortable BUT the end was in sight. Finally. After 12 months.
Winter approached which also brought with it panto season! My first main part after “being ill” I was to be the baddie, the evil queen wicked step mother with my drama group. I covered my moon face in white paint, eye lashes, glitter, a black wig, n a big dress. It provided escapism, and my wonderful friends were ever supportive. Even when my feet refused to wear shoes much longer and I resorted to converse. “Oh what a mean queen!!” I was sweaty, hot, and I laughed and laughed and laughed. To my friends I’m Jane, not NMO, not “diasbled” or “ill” not a moon face, just Jane.
Following this was christmas, and my 30th birthday. At this point I felt so concious of what I was eating, desperate to get the weight off. My birthday was lovely, spending time with family. Inside, as morbid as it sounds, I was breaking down. I felt SO fed up. Who was this person looking back at me in the mirror? Who was I? I had a rare illness, some sought of weird feeling passed over me. Depression? Stress? Worry? A feeling of loss? Looking back now I should have cried and cried and cried and I just didn’t. Why? This my friends I have no answer for.
“Happy new year!” The end of 2015. Yay I thought to myself.
I knew one thing for sure. I’d had enough. Enough of being fed up, of feeling sick with meds, of being in pain-I ended up on tramadol for fuck’s sake cos the codeine wasn’t having any effect now.
I knew 2016 had to be better. I was due back in Liverpool in a few months at the walton centre.
2016 had to be better. It just had to be.