Chapter 3: Drip, drip, drip

I was stuck on the hellbound train to self-destruction. It sped on through my life with me on board, a confused passenger stopping at the stations of engagement, marriage, moving abroad together and buying a house to do up. I was travelling to all the desirable destinations and the postcards looked picture perfect. But it wasn't really my life.

I was in so deep, so committed to the pretence of perfection, and the only thing missing from the idyllic scene were some adorable children. I turned 30, the age my mother had been when she was pregnant with me, and we decided to start a family.

Objectively this was a horrible idea. I was sluggish, depressed, in pain and disillusioned. But in for a penny, in for a pound! It was the next stop on the train that I wasn't willing to get off until it derailed.

The drip, drip, drip of accumulating symptoms became a torrent during my first pregnancy. A new level of exhaustion, a nausea that stopped me from eating, jittery stress, even worse insomnia, and to top it off, the rage that I had tried to keep a lid on my whole life was becoming unmanageable. I was so angry that I “had to” give up my body to bear a child. I saw the foetus as a parasite, sucking me dry of what little energy I had left. And I felt guilty for feeling this way, sad for my baby, sad for myself. I want to be a mother, not a monster! I had reached an unbearable pinnacle of internal torture and something had to give.

The thing that gave out was the vision in my left eye. A blurry patch at first, not enough to have me worried. Not enough to make me see what I had been unwilling to see. But a persistent blurry patch. Persistent enough to send me to an optician, who referred me to an ophthalmologist, who referred me to a neurologist, who did a whole load more tests and sent me away with a misdiagnosis of an infarct in the optic nerve and the best of luck having my baby.

That misdiagnosis didn't sit well with me. An infarct in the optic nerve is something that typically happens to old men. And I knew that the neurologist also dealt with (and looked for) autoimmune disorders like multiple sclerosis, which typically affect younger women like me, especially given my history of IBS, nutritional deficiencies and hyperthyroidism. But I was about to give birth and the relief of not being diagnosed with multiple sclerosis left me off the hook to focus on the task of becoming a mother.

Childbirth was a wild ride of guttural screams, then I had this little person placed on my chest. She looked angry. She needed love, she needed warmth, she needed food. And everything she needed had to come from me. I tried to breastfeed her and more screams emerged from me. I remember in the aftermath feeling a kind of out-of-body experience. After we got taken to our room, I looked at myself in the mirror in the hospital bathroom. My belly was empty, my body thin and alien to me. Weak, exhausted.

Some days later at home, I was lying in bed with my daughter on my belly, just looking at her. In the peace and quiet, I was finally able to come back to myself a bit. I looked at her little face, how her eyes darted behind her lids as she dreamed, how her little nose was scrunched up. I started to cry. My husband ran in, asking what was the matter. “I think I’ve just fallen in love with her!” I sobbed. All the pain, the stitches, the enormously painful breasts, the exhaustion, the difficulty breastfeeding. It all felt a little more manageable.

The months rolled on by and my vision continued to deteriorate, eventually leaving me without any of the central vision in my left eye, and I finally sent my neurologist an email to let her know. She booked me in for a spinal tap and contrast MRI and then sat me down in that brightly lit consultation room to give me that diagnosis of neuromyelitis optica.

And now, in hindsight, the ‘sudden’ onset of my illness doesn’t seem so sudden. Drip, drip, drip.

Contact

anna@autoimmunerecoveryproject.com

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