I have deteriorated further. My neck keeps subluxing and breaking away further in a particular direction and my skull rolls about independently on the pillow so I can’t ever keep it still or safe. It’s impossible to sleep with it moving around and bending the vertebrae close to snapping point. I’m rarely able to look […]
As you would have gathered from the post-surgery update (you can read it here), I desperately need another operation to fix what happened in the last one and being fused into the wrong position without the correct amount of intraoperative traction. I’m fighting for my life every day. It’s not only the stagnation […] We are in a state of shock and devastation. Jenny immediately knew after the operation (an occipitocervical fusion and also a posterior fossa decompression) that something was very wrong but wasn’t able to communicate it for a while, especially while in the Critical Care Unit after the operation and having lost so much blood […] I have no wit, no words, no tears; My heart within me like a stone Is numb’d too much for hopes or fears; Look right, look left, I dwell alone ~ Christina Rossetti
My last health update at the end of my ‘Best and Worst of 2018’ blog post was over nine months […] 
These are my best and worst books, films, television programmes, sport and videos of 2018 […] 
I was trying to wait until we had more definite information and a firm plan of action until I posted an update but so many of you have been asking how I am (thank you for caring!) that an update is needed. In case you don’t follow my twitter or facebook feeds, […] Jenny is alive and back home! She has physically deteriorated and is in a bad way from the long ambulance journeys and the noise of being in a hospital and having doctors and nurses constantly coming into her room in hospital, which was always going to make her worse. We knew that before we went […] 
Human beings need five things to survive: water, food, oxygen, sleep and also sufficient warmth so that they don’t get hypothermia. For many people with disabilities, the total removal of plastic straws would take away one, sometimes two, of these five essentials to stay alive. Before plastic straws were invented, a lot of […] 
Let me tell you a bit about my parents. They have worked relentlessly hard to care for me so incredibly well for over 13 years since I became seriously ill during my first term at university. They have given up everything for me but frequently tell me that looking after me is their […] The past four months have been brutal. On top of all the ambulance journeys, as I explained in my previous blog post, I can now only lie horizontal with my head touching my pillow for two out of the twenty-four hours in a day because the blood flow to my head gets so cut […] |
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