Today is 13 October 2016, 8 years to the day I was advised by my GP to go to A&E (Accident and Emergency) as soon as possible. I was feeling strong pins and needles, and shooting, stabbing pain all throughout the saddle area. Sitting for any length of time was painful. So was standing. Walking was painful. I was due to deliver a presentation that evening, but going to A&E took priority.
In A&E, a host of tests were done. Despite being in pain, I was pretty relaxed, chatting with my husband and making my way through a bag of Haribo sweets he brought me. (Learning: Do not eat sweets whilst in A&E. It wreaks havoc on your blood sugars, and the nurses ask you all sorts of questions about whether you are diabetic and may not be convinced if you tell them no.) They wanted to admit me. I was meant to fly to the USA in three days for my sister’s wedding, so I wanted to return home. They strongly advised me to follow their advice.
Tests commenced. Long sessions in the MRI scanner. A lumbar puncture that took a longer needle and 3-4 tries. I had to remind the very excited medical students that there was a patient at the end of the needle who was scared, in discomfort and needed to be looked after. With each passing day, the pins and needles and stabbing and shooting pain progressed down my body. Banding pain joined the noisy party inside of me. Walking felt like pushing through the heaviest of treacle and my legs felt twice the size they actually were. I acquiesced to using a wheelchair. I never made it to my sister’s wedding.
The pain, odd sensations and banding crept above my waist. More tests were ordered. Water hitting my skin and wearing clothes became painful. I couldn’t sense temperature either. But I still showered telling myself I was going to maintain a routine and be clean despite everything. Time feels plentiful in hospital so I laid there doing visualisations of a healing white light going up and down my spine and forced myself to walk as far as I could.
A surprise for me and highlight for the neurologist leading my case was accidentally discovering that I have another rare neurological condition in her area of expertise – movement disorders. So I was discharged from hospital with two rare neurological conditions! But in relation to Transverse Myelitis, they only told me that I had ‘inflammation of the spinal cord’ with two lesions at C4-C5, was seriously ill, should not work for several months and rest. I was worried as my job had been made redundant earlier in the summer and I was actively looking for work. But I was forced to rest because of the fatigue and pain.