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Unrelatable, Relatable Disabled Girl Just Trying to be Cool

The Beginning

There's no name for what I have. No neat little box that my doctors put me in to explain what's wrong. Instead, I have lots of little things that add up to a bit of a s**t show. Five years ago I had to have an emergency Lumbar Puncture. For those of you who don't know, that's a huge needle stuck in your lower spine to extract brain fluid. It went terribly wrong with them going too low, too deep, too many times. The following 18 months couldn't have been written bleaker: my life went down the toilet, the job I loved suffered, and I spent nearly all of my time at the doctors complaining of a number of symptoms they just couldn't make sense of. It was one of those classic, "You've got some spinal trauma, it'll just take time to get over it" situations. Fast forward to March 2018 and my Bladder stopped working entirely. I visited A&E three times in a week just so I could have a wee. They rushed through a referral to the Urology Department at Guys' hospital, stuck a Urethral Catheter in me and sent me on my way. After we'd ruled out anything really, REALLY scary we found out that the doctors who performed my Spinal Tap had actually ripped through my Sacral Nerve. The eighteen months I went without anybody listening to me meant from the waist down, my body just broke down. Spinal trauma; untold pelvic nerve damage; huge muscle damage; and, the icing on the cake, the bladder of someone who was basically dead. Pain became my companion. Wetting myself through my catheter became commonplace (rather comically, about a month after I had my catheter fitted I decided to wear a white jumpsuit out for my husbands' birthday... we can probably all imagine how that went). 12 weekly operations were a new way of life because my body refused to accept anything they put in me. Wires attached to my spine became my new accessories. My right leg decided to pack up shop and, as much as I held out, I eventually needed a walking stick.

The Middle

Getting used to being newly Disabled was something I refused to do. This wasn't me. I wasn't Disabled. I was 27 years old. I refused to live the life of somebody who couldn't quite keep up and burned myself into the ground. Emergency hospital visits were commonplace in those first 12 months. I'd crawl around my house, screaming in agony, unable to fathom how to make my body work for its new normal. We'd arrive and it would take doctors exactly 2.8 seconds to hook my up to a Fentaynl drip and then we'd head home, me absolutely off my nut and wanting to visit every shop we passed (this hasn't actually changed, although we now pass through London Bridge Station and Paperchase is always my go to). Eventually, my doctors told me there was nothing that could be done to help me. Morphine became the way I got out of bed in the morning. Deep, scary conversations about how our lives would always be this kind of terrible ensued between my Husband and I. We didn't mention having children in those early months even though, after 8 years together, we both knew we'd need to face that question eventually. But we muddled through. A small outing here, a week off my feet there. Preparation for operations. Just adjusting. Just surviving. Just keeping our heads above water.

The Now

I'm not sure when things changed. I'm not sure when it clicked that just because I had something wrong with me didn't mean my life had to stop. But it did. It didn't happen overnight, these things take time to get used too. Slowly, I'd push myself a little more. I'd go a little further from home. I'd try to sleep a little less. I'd force myself to not rely so heavily on pain medication. If I was stuck like this, I needed to find a way to cope. And I do. Don't get me wrong, sometimes I do still crawl around my house screaming in agony. But other times I don't. I'll go out alone. I'll take it slow. I'll listen to my body and accept my limits. But that doesn't mean I can't do me. I just do me in a different way.

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Unrelatable, Relatable Disabled Girl Just Trying to be Cool

There's no name for what I have. No neat little box that my doctors put me in to explain what's wrong. Instead, I have lots of little things