"Recovery post brain haemorrhage"

Arriving at Salford Royal in the ambulance I felt in good hands with the neurosurgeons. They were a very professional team. 

My experience of the ward wasn't good. One nursing assistant was rude to the disabled, confused patient next to me. They didn't attend to their wet bed and blamed the patient for it when another staff member called them out, trying to pretend they checked on them regularly (never once had they been to our far corner of the ward). 

A nurse was awful to me when I was in severe pain when the blood was in my spinal cord and causing severe pain. The mattress was saggy and I asked for an extra pillow to put under my hip to straighten my back. They said there wasn't a spare pillow in the hospital and just walked away as I pleaded with them for help.

When I lost the ability to swallow, I was told it was just a feeling and not really a blockage. I didn't find out until later that they recorded in my notes that I had eaten and enjoyed my meal that day when it was returned uneaten. I was bedridden so they knew nothing was coming through the other end during my 10 day stay so I don't know what they thought my body did with the food. I thought they had put me on the drip in response to me not being able to eat but it turned out that was just because I was dehydrated.

I was referred to neuropsychology due to some problems showing up on the cognitive tests. They rang without warning and I was asleep. My husband told them I was sleeping excessively. After 5 attempts to contact me (by phoning without an appointment) they got through to me and I told them I was sleeping all the time and really struggling. They discharged me without ever seeing me.

 I waited to get better but instead, the brain events that occurred daily just manifested in new ways, for example I no longer had the episodes where my eyelids wouldn't open and I lost my balance but instead I lost my hearing and suffered from hours of totally disabling room spinning vertigo.

I was referred to ENT who couldn't find the problem (I asked for a neurology referral too and was told I couldn't have one as ENT were dealing), then I contacted my neurosurgeon who investigated for a year and then referred me to neurology (with an 80 week wait). So, suffering every day like this, it took 3.5 years to get to neurology after I was discharged from neuropsychology. 

I was hoping for some understanding and help. I was given one option of migraine preventatives to help and I was then told they didn't want to change the medication as it had reduced the pain a lot. However I was still suffering from hearing loss, vertigo and  cognitive problems, I believe the same cognitive episodes that were captured on the initial cognitive testing and were labelled as a moderate executive function problem that triggered the referral to neuropsychology.

It wasn't a permanent executive function problem, but sometimes I can't speak, sometimes I am unable to look at any clock and be able to tell the time, I might not know what day it is, what I did that day or the day before or what I am meant to be currently doing. I might not know how to get through a door I open every day, how to pay at a parking meter (that I have used before while being coached through it - they gave up and let me go in the end - I was at hospital and nearly went to A&E to tell them my brain wasn't working properly, but I have experience of how that goes so I didn't) or I can't figure out how to get out of a shop because the mat I walked over on the way in now looks like a wall.

My neurologist has 2 explanations for these things, they said I am getting older (it makes me wonder why we are meant to go on working until 67 if this is what happens to people in their 40s) and that my main problem is a lack of concentration! 

They discharged me and I am seemingly able to get no help to get this under control.