It's been 6 weeks since I was discharged from hospital, and so much has changed. Most days I can walk unassisted, with well controlled pain, for a good length of time. I wear patches on my back, take gabapentin religiously, and look like a normal 20-something woman with no spinal lesions to strangers who pass me.
I'm frequently going to the gym and I've got a new bike (some shitbag stole my old one!) and I'm tearing up the streets of Cambridge. I've started doing some short shifts at work which I'm finding tough, but it's a good step forward. The Brain and Spine Foundation are doing the 3 peaks challenge in May and I'm very tempted to join up...
Other days though - the days most people don't see - I'm still in a lot of pain and I can't do much except curl up and hope it stops soon. I thought Crohn's, pernicious anaemia and an epilepsy drug regime had taught me the true meanings of the words "fatigued" and "exhausted" but I was wrong. The lethargy I feel approximately 30% of the time is all consuming and stops me doing more than I think most people realise. Some days my legs don't want to work and start spasming. This happened once in a yoga class - I thought yoga would be a beneficial thing for my fairly broken body and mind. I put myself in the back corner of the room because I knew I'd struggle and hoped I'd go un-commented on, if not un-noticed. The instructor saw I was struggling and came over to help me - a nice gesture, but a humiliating one too. I explained to her that I've only recently learned to walk again and I was here to do some gentle stretching, not become a yoga expert, and hoped she'd leave me alone. Instead, she spent the rest of the class manipulating my painful and weak legs into positions, despite me clearly wanting her to turn her focus to the other 11 people and stop publicly highlighting my disabilities. She didn't, and I left that class feeling a bit useless.
Spending a long time in hospital and being pretty isolated from people has motivated me to spend lots of time with friends and family who I've been too busy to see recently. It's been lovely to catch up (and I've still got some visits to Leicester in the pipeline for when I'm able to do trains on my own) and it's given me a sense of connection again. Talking to people who I've not had a chance to see recently has also played a big part in my recovery. I worry it's more than a little narcissistic, but their encouragement and amazement at my progress makes me feel a lot better about myself, and motivates me to do more.
They're teaching me I don't have to be amazing - being me is good enough.
Love Emily x
