Friday, 10 June 2016

Day 2 - getting programmed

After barely having any sleep and giving into having strong pain killers overnight (10mg of oramorph) I was still in a massive amount of pain. I was barely going to the toilet but when I did I still needed someone to help me get out of the bed.
I had a little bit of toast that morning, as it was the easiest thing to feed to myself whilst lying down. Even sitting up using the bed to support me was too much. My right shoulder/arm is having to be rested against a pillow to support it from falling back too far. I eventually had to double the dose of oramorph to try and get past the amount of pain I was in!
The nurse still check checking the strength in my grip and pushing of my feet. I was so sure that I gripped her hands really strong, but she seemed to suggest that I still had weakness to the right side. Surely that is because my chest hurts and that muscle is tensed when I grip her hands!!!!!

During the morning the wards got changed round and the ladies all went to the men's side, as there were more of us. They also needed to make space for the day patients coming in to use the day unit. 

Later on that morning, Mike from St Jude's, came to see me to get my stimulator switched on. It was nice to see a face I knew and I got to quiz him about what the equipment taken out was like. He said the battery was pretty grim and covered with a gross amount of tissue. He likened it to an episode of Dr Who he had seen once, where silicon stuff grew on everything it touched!! This made me laugh. I like the gorey details! 
After forgetting the my battery was no longer in my abdomen and finding the precise place to put the wand, we got it all connected and began to set some programs. He explained how the new burst programs work, where the frequency is working but without me feeling the sensations. However, to set them up I have to be able to feel them to say how they feel. So I've got 5 programs. Two are normal 'tonic' settings and then he has created a 'burst' setting to match each of these. He has also created a program that uses both leads at the same time but on the burst setting.  We turned the stimulator off for now, as it obviously needs chance to settle. 
Mike discussed how he feels having both leads should give us more chance to find the right settings to help me, especially due to the fact that I unusually have to work on such low frequencies. Even when creating the programs he noted how the intense feeling came in so quickly to me compared to other patients. He did also say he remembers my consultant stating how little fascia fat I had in my neck, meaning there isn't any way to put the lead any further back off the nerve. 
He also mentioned how unsupportive my work seem to be, as I apologising for having to contact him about recovery time previously. This seems to be a recurring factor! It's so screamingly obvious! 

Mike explained that I would see him again in about 4 weeks time and then went over to see 'Chloe', who had had the same surgery but for Cluster headaches. I could hear him saying thugs I had said to him to reassure her, such as how much more painful this time round was etc. 
It was interesting to hear that when she was being programmed she described things very similarly to how I do. 
At this time I realised that I do have a positive attitude towards all this. I don't seem to panic about what has happened or how it is. Comparing myself to someone in a similar boat, I am strong and laid back and taking things as they come. This made my feel more like I am in control.

The rest of the day kind of passed by. I asked a nurse to help me change into my pjs, as the gown is so irritating. She was great and did so whilst I lay down. 
Chloe came over to chat to me. For both of us, it was refreshing to discuss our conditions, the surgery and the hospital. She was definitely a worrier and I ended up being her reassurance and support but that felt good. She mentioned that her chest battery had not secured in place for her very first surgery and she had to have revision before this, as her third, stimulator surgery. She also said that our consultant had learnt that making a deeper pocket for it was better, so I'm hoping that is the case for me too.

Here are a few photos. Nothing much to see, as they have kept it all completely covered up.

I had a few visitors later that day, which really helped as I was beginning to feel pretty dizzy and a bit sick. I barely ate any tea but then I had just had a hot chocolate from Costa! Mmmmmm!
I didn't get much sleep but the fuzzy feeling didn't really subside. 
I didn't really think much of it and still hoped I was doing ok. 

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