My recollection of the time leading up to my 'visit' to ICU are patchy at best but what I remember clearly was Christmas day 2015. I woke up that day with pain in my joints, which had been achy for a few days prior. I thought this was the start of a virus but that day my joints where painful and I needed my dad's help to get out of bed. I managed to struggle through the day spending a lot of time in my seat in the living room listening to my family and trying to have a good time but I needed to go to bed early as I had no energy and was extremely tired. In hindsight, there were a lot of warning signs, my lack of energy, the pain and the fact I am pretty sure I hardly urinated for a couple of days prior. The 26th of December, we decided that I needed to be seen by a doctor, deciding that the pain and lack of energy in an immunocompromised person like myself was something I needed to have a medic take a look at.
So a few things you need to know about me before I continue, I have spent a lot of time in the hospital with various issues, infections, bleeding issues, bowl twists and a host of other issues, so given the choice I will always take the choice that keeps me out of hospital and at that moment we thought it was just a virus that was beating up on me.
I saw an out of hours GP, I was only able to shuffle into the clinic as my movement was heavily restricted. The GP gave me the choice of going into hospital or trying anti-inflammatory medication to try and reduce the pain in my joints which might allow me to stay out of the hospital. As I felt ok mostly outside of the joint pain, I thought that it was not unreasonable to give the medication a chance and the thought of managing to stay out of the hospital was an attractive prospect.
The next sections of what happened to me are from the notes and logs that my parents as I have no memory of what happened to me. The next day, the 27th of December I was taken into hospital as I was in more pain and was barely able to stay awake. The Emergency Department (ED) assessed me and decided that I would be sent to the medical receiving ward, however, a nurse from the department felt that I was too unwell to be sent there and that I should be sent to High Dependence (HDU) because I was going to need hourly monitoring and I would not receive that care on a 'normal' ward. When my parents asked the junior doctor if he was sure this was the right course of action he said that he had checked with his senior and they had decided that the receiving ward was where I needed to go. The Nurse, however, was not happy with this and told my parents she would come up with me and have a word with the HDU staff to get me assessed by them. Within an hour HDU staff had seen me and taken over my care bringing me into the HDU unit. On the 28th December: I received head and abdomen CT and was suspected of having flu, my heart rate was 150+. By the 29th December they Tried to do a MRI but I was not tolerating lying flat while on oxygen. I was transferred to ICU where I was intubated due to my increasing paranoia and worsening condition.
I will not go step by step in my ICU stay but I nearly died a few time in my stay. While I was in my medically induced coma, I believed I was being tortured and on a few occasions I escaped and was hunted down by them. I believed I had been living this hell for 8 years when I woke up and before you ask why I didn’t know it wasn’t real, your brain tells you what is real and what is not and my brain was trying to rationalise what was happening to me. I was being cut, poked and probed in the real world and my brain was trying to understand it. I had intubation tube in my throat, an ng tube up my nose, an art line in either wrist (not at same time) as well as two central lines with 5 or 6 Ivs going at the same time. Consultants and experts from all over the country where asked for advice to try and figure out what was causing my problems, which we never really got to the bottom of. I was transferred back to HDU on 18th of January. We thought this was the beginning of the end of my recovery little did we know it was but the start of my problems, Post Intensive Care Syndrome was not something I new about but it was going to change my life forever.
Authors note: Hey guys, thanks for reading, I am sorry I am not getting these blog posts out as quickly as I would like but this is not an easy topic for me to speak about even years on. I’d like to thank Mitochondrial Eve who inspired me with her blog and podcast to do this and not fear what the internet might say. I will forever be in the debt of Crosshouse hospital ICU team and the InS:PIRE program for getting me back to ‘normal’ somewhom can be found by my Twitter.
I will in my next post cover the 14 weeks I spent in the hospital afterwards and catching swine flu in the hospital. I am also working on a post about my current journey to have one of my wisdom teeth removed and the accompanying medical drama.
